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Circle of Friends (PDF download)

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									  Circle of Friends                                                                                                                                    Contents
                                                                           Circle of Friends
                                                                           Publisher
                                                                           Canadian Cystic Fibrosis Foundation


  Linking CF Adults
                                                                           2221 Yonge Street, Suite 601                            Editorial......................................................................................2
                                                                           Toronto, ON M4S 2B4                                     Editorial, Autumn 1988.............................................................3
                                                                           416-485-9149 OR 1-800-378-2233
                                                                                                                                   From the Canadian Cystic Fibrosis Foundation
                                                                           info@cysticfibrosis.ca                                  Twenty Years of Inspiration......................................................3
Issue 1, Spring 2008                               www.cysticfibrosis.ca   www.cysticfibrosis.ca                                   Twenty Years of Leadership and Action!..................................4
                                                                                                                                   Twenty Years Strong and Counting..........................................8
                                                                           Editor                                                  About the CCFF.........................................................................9
                                                                           Carole Varin


20th Anniversary
                                                                                                                                   Cystic Fibrosis 2007 Achievers’ Award....................................19
                                                                           129 McMahen Street                                      CCFF News...............................................................................25
                                                                           London, ON N5Y 0A2
                                                                           519-858-8544                                            Reflections from Current ACFC Members



Special Issue
                                                                           cvarin@rogers.com                                       Getting Involved.........................................................................6
                                                                                                                                   Experience of a Lifetime............................................................7
                                                                           Design & Layout                                         Opportunities from the ACFC....................................................8
                                                                           Eileen Hoftyzer                                         Accepting Life as an Adult with CF............................................9
                                                                                                                                   Paulette Boston: A Positive Outlook on Cystic Fibrosis..........10
                                                                           Cover Photo                                             Celebrate with a Chuckle.........................................................24
                                                                           Rob Thomaes                                             Contact Your ACFC..................................................................25

                                                                           Translation                                             Special Section
                                                                           Sophie Charette                                         Reflections of an Adult with CF................................................11
                                                                                                                                   Twenty Years of the Adult CF Committee...............................12
                                                                           Denise Orr
                                                                           Provided free to adults with CF in                      Reflections from Past ACFC Members
                                                                           Canada.                                                 A Life Resumé - What Was, What Is, What May Yet Be.........15
                                                                                                                                   My Journey on the Adult CF Committee.................................16
                                                                           Available in Adobe Acrobat PDF format                   Remembering the Past, Dreaming of the Future.....................17
                                                                           at www.cysticfibrosis.ca
                                                                                                                                   Reflections from Professional Advisors and M/SAC
                                                                           The CCFF and the Editor welcome all                     Representatives
                                                                           submissions, but reserve the right to
                                                                                                                                   Bravo!.......................................................................................20
                                                                           condense and edit them.
                                                                                                                                   Happy 20th Anniversary Adult CF Committee.......................20
                                                                           Submissions do not necessarily reflect                  An Experience to be Remembered...........................................21
                                                                           the position of the CCFF.                               You are an Inspiration.............................................................22
                                                                                                                                   Elbows, Sweat and Heart.........................................................23
                                                                           Please write or call to be put on our
                                                                           mailing list for your free copy.


                                                                                                                                                            Former Editors
                                                                                                                                                      Bryan Iverson 1988-1992
Inside this issue:
                                                                                     The QCFA is a provincial association of the
                                                                                       Canadian Cystic Fibrosis Foundation.
                                                                                                                                                       Mike Burrill 1993-1996
                                                                                                                                                       Bernard Bitz 1997-1998
                                                                                The printing and distribution of this
                                                                                                                                                    Paulette Boston 1998-2000
   Special 20th Anniversary Section                                             newsletter are possible through the
                                                                                     continuing generosity of                                        Debra Mattson 2000-2003
                                                                                                                                                   Nancy Kernaghan 2003-2005
   Paulette Boston: A Positive
   Outlook on Cystic Fibrosis                                                    Organon Canada Ltd.                                                 Talia D’Alessio 2005-2006

                                      Breathing life into the future
                                                                   TM


   Remembering the Past, Dreaming
                                                                                                                                       PAGE 1
   of the Future
                                                     Editorial                                                                                                Editorial, Autumn 1988
                      A True Circle of Friends                                                                                                       By Bryan Iverson, Editor, Circle of Friends, 1988-1992

                                   By Carole Varin, Editor, Circle of Friends                                                                                                            need a means of communication. The first of these two,
                                                                                                                                                        Bryan Iverson was one of         an organization of adults with cystic fibrosis, you will
Letters. Words. Sentences. Paragraphs. Stories.                                                                                                          the driving forces in the       hear more about in the near future, depending upon
                                                                                                                                                        formation of the Adult CF        how the CCFF responds to our recommendations. As
Each element gains more meaning and power as it                                                                                                        Committee, and the first ed-      for the second issue, you are now reading what I hope
builds. With every letter that turns into a word, every                                                                                                  itor of Circle of Friends.      will become a newsletter with national circulation to
word that turns into a sentence, and finally into a para-                                                                                                Below is a reprint of the       address the needs and concerns of all Canadian adults
graph and a story, our private thoughts and emotions                                                                                                      editorial from the first       with cystic fibrosis.
have the ability to resonate far beyond the confines of                                                                                                   issue, in Autumn 1988.
our pen. Our stories become timeless, forever etched in                                                                                                                                  The executive of the Canadian Cystic Fibrosis Founda-
print and burnt into the collective consciousness of hun-                                                                                                                                tion supports the idea of a national publication. For
                                                                                                                                 Bryan Iverson                                           such a project to be a success, we need two things.
dreds, if not thousands, of friends – friends that look
forward to and digest every letter, word, and sentence                                                                      In early May, 1988, 31 CF Adults from across Canada
that we write; friends that could write strikingly similar                                                                  met for two days at the Bolton Conference Centre,            1) We need responses from Canadian adults with CF in
stories; friends that allow their tears to drop on our let-                                                                 northwest of Toronto. The purpose of the meeting was         the form of letters to the editor, articles about cystic fi-
ters, sentences, and words, comforted by the familiarity                                                                    to provide a forum at which we could exchange ideas          brosis as it relates specifically to adults, and ideas of
that regardless of what the future holds, today they are                                                                    and concerns relating to adults with cystic fibrosis.        what you want in a newsletter and in a national organi-
not alone.                                                                                                                  Many ideas were exchanged – into the late hours of the       zation of CF adults.
                                                                                                                            first evening, only to start again early the next morning!
Circle of Friends is more than a newsletter. It’s more                                                                                                                                   2) Obviously, we also need a mailing list. If you know
than a series of updates, ideas, and information. It’s a                                                                    As we became aware of both the similarities and the          anyone who would like to receive future issues of the
time capsule that galvanizes these private thoughts and                                                                     striking differences that exist across the country, we       newsletter, please provide their name and mailing ad-
emotions that contributors were willing to make immor-           Carole Varin, on a March 2008 trip to South Africa         agreed on two main issues: we need to be organized           dress. For the cost of a stamp, their name can be put on
tal in the hopes that it could change the course of some-                                                                   (hopefully within the structure of the CCFF), and we         the mailing list to receive the newsletter of CF Adults.
one’s life. Those who contribute stories don’t ask for

                                                                                                                                                       Twenty Years of Inspiration
recognition or feedback. Their only aim is to forge a con-
nection with the reader so that they know not every bat-
tle needs to be fought alone.
                                                                                                                                                                   By Laura Read, President, CCFF
We now have the opportunity to celebrate 20 years of                                                                       Years ago, when my son was just a toddler, I was full of      After hearing the reports
stories told, connections made, and lives changed. As we                                                                   questions as to what a future with cystic fibrosis would      and talking with the Com-
celebrate, we must remind ourselves that time capsules                                                                     hold for him. Would he live to be an adult? Would he          mittee members, I left that
contain history and some of our celebration should be                                                                      ever be able to afford living without us? Would he be         meeting a little stronger. I
for the writers whose words resonate from a life already                                                                   well enough to attend university? To get married? To be-      knew that whatever hap-
lived. To this end, I ask that you take a moment and re-                                                                   come a productive and positive member of society?             pened with my son, there
member the impact each of the following names had on                                                                                                                                     was a motivated group of
our lives. They were not only Adult CF Committee mem-                                                                      Then I attended an annual meeting of the Canadian Cys-        people who were dedicated
bers and writers for this newsletter, but life-changers,                                                                   tic Fibrosis Foundation. One committee report stood out       to making his adult future
mothers, fathers, sons, daughters, brothers, sisters, and                                                                  for me. It was an update on the newly formed Adult CF         healthier.
friends to us all.                                                                                                         Committee. I saw firsthand how a group of adults living
                                                                                                                           with CF had bonded, with the aim of making life better        My son has grown up now
Sherry Avramenko               Sonia Grenier                                                                               for all. They had taken control of their own health and       and many of my questions             Laura Read
Sharon Baptie                  Tammy Hewey                                                                                 were advocating for the health of others. How comforting.     have been answered. He’s
Roger Barnard                  Bryan Iverson                                                                                                                                             finished university and is working as a chemical engi-
Bernard Bitz                   Sue McKellar                                                                                At the meeting, I was able to chat with some of those         neer. He no longer lives at home and has become a pro-
Janice (Hart) Boston           Bob Phillips                   To submit ideas, stories, art, pictures, or anything else,   adults who had lived and had accomplished many of the         ductive member of society.
Dennis Bunyan                  Marie-Hélène Roger                          please contact Carole Varin:                    same dreams I held for my son. They lived independ-
Michael Burrill                Dean Rose                                                                                   ently, attended school, worked, and even had children of      I’ll always be grateful for that first meeting and the mo-
                                                                                 Phone: 519-858-8544
Elise d’Anjou                  Denis Rouault                                                                               their own. When they saw my insecurities, they were           ment that a group of adults shared their hopes and in-
                                                                              E-mail: cvarin@rogers.com
Marc-Éric Desmarais            Frank Smyth                                                                                 eager to share their stories and make me feel better.         corporated my dreams into their circle of friends. Thank
Brianna Drake                  Gaétan Verreault                    Mail: 129 McMahen Street, London, ON N5Y 0A2
                                                                                                                           How inspiring.                                                you for 20 years of inspiration.

                                                        PAGE 2                                                                                                                       PAGE 3
Twenty Years of Leadership and Action!                                                                                        Foundation’s work today. These principles included vol-
                                                                                                                              untary and informed consent (entailing availability of rel-
                                                                                                                              evant, full, and accurate information); personal choice;
           Celebrating the Accomplishments of the Adult CF Committee                                                          and confidentiality respecting personal information.

                           By Cathleen Morrison, Chief Executive Officer, CCFF                                                One of the big triumphs for the Committee and for the
                                                                                                                              Foundation was a decision by the Government of
                                 This issue of Circle of      Frank described the role of ACFC as follows:                    Canada (effective in the year 2000) which allowed per-
                                 Friends is very special.                                                                     sons with CF, who are required to spend more than 14
                                 It marks the 20th an-        We need to work towards making sure that (adults                hours per week undertaking medically prescribed life-
                                 niversary of the Adult       with CF) have a way of sharing their wealth of experi-          sustaining therapy (including physiotherapy), to apply
                                 Cystic Fibrosis Commit-      ence and knowledge about living with cystic fibrosis            for the (federal) Disability Tax Credit. Bryan Iverson
                                 tee (ACFC), and the          with others, because this group can (be), and should be,        and Roger Barnard (Sillery, Quebec) were leaders in
                                 20th anniversary of this     instrumental in providing ideas and direction for many          this advocacy effort. Prior to this landmark decision, the
                                 newsletter, of which         issues that directly affect the quality of life of those with   Government of Canada gave very limited consideration
                                 Bryan Iverson (Stettler,     cystic fibrosis.                                                to the severity of impairment caused by cystic fibrosis.      The 2005 ACFC (l-r): Kim Black, Paul Underhill, Cheryl
                                 Alberta) was founding                                                                        The ACFC had initiated the long battle on this issue in        Corcoran, Nathan Fish, Carole Varin, Sharon Wiltse,
                                 editor.                      While the pressing needs of adults with CF was to be            1991, under the leadership of Janice Boston (London,          Nancy Kernaghan, James Tapankov, and Julie Gagnon.
                                                              the focus of their mandate, Frank and the Committee             Ontario).                                                        Absent: Kelly Sheppard, Ann Julie Desmeules,
                                 Much has changed in          vowed not to overlook vital issues affecting the lives                                                                                       and Dr. André Cantin
                                 the last twenty years.       and health of children. They wanted to make life better         In more recent times, the Committee, chaired by Dale
      Cathleen Morrison          The ACFC was formed          for all persons with CF. This is still the Committee’s          Walsh (Marystown, Newfoundland and Labrador),                 cluded (in addition to those mentioned above) Denis
                                 in 1988 – the same year      philosophy.                                                     played a central role in the establishment in St. John’s of   Rouault (Edmonton, Alberta), Michael Burrill
in which surgeons in Canada performed the world’s first                                                                       a specialized clinic in 2005 to serve adults with CF, and     (Toronto, Ontario), Bernard Bitz (Saskatoon,
successful double lung transplant involving a person          An early activity of the group was to participate in the        initiated a major project comparing public coverage of        Saskatchewan), Paulette Boston (London, Ontario),
with CF. Now, 20 years later, hope for new life with new      preparation and presentation of a brief from the Cana-          drugs and medications for people with CF throughout           Sharon Baptie (Peterborough, Ontario), Bob Phillips
lungs has become a realistic prospect for many persons        dian Cystic Fibrosis Foundation, in 1990, to the Royal          Canada. Committee Chair James Tapankov (Barrhead,             (Halifax, Nova Scotia), Jacquie Romano (Waterdown,
with CF around the world.                                     Commission on New Reproductive Technologies. Sue                Alberta) and colleagues moved forward to document the         Ontario), and now Karen Gliddon (Brantford, Ontario),
                                                              McKellar and Foundation President Phil Wall led the             gaps and variances that exist in the availability of essen-   has carried out projects and recommended policy per-
In 1988, we didn’t yet know what gene might lie at the        CCFF presentation before the Commission. The princi-            tial CF medications across all provinces. The resulting       taining to drug and equipment coverage, home IV use,
root of cystic fibrosis. Now, we not only know which          ples articulated by the Committee and by the Founda-            Committee report in 2007 has yielded important base-          transplantation support, taxation, sexuality and CF, a
gene is responsible, but are aggressively exploring ways      tion’s Board of Directors at that time still guide the          line information towards the goal of more equitable ac-       brochure for parents who have cystic fibrosis, and
to correct the basic genetic defect, and are also learning                                                                    cess for Canadians with CF to the drugs and medications       lately, has helped to promote newborn screening for CF
about other genes that can make CF more or less severe.                                                                       that sustain their lives. The recent establishment of a       in Canada.
                                                                                                                              working group to begin addressing gaps in CF drug cov-
In 1988, one-third of persons with CF in Canada were                                                                          erage has set the agenda for the work of the ACFC             And of course the Committee has driven the publication
adults. In 2007, for the very first time, more than half of                                                                   through the years to come!                                    of Circle of Friends, a unique resource for the sharing of
Canadians with CF are in their adult years. Although our                                                                                                                                    information and personal stories throughout the CF
work is far from done, this is indeed an important devel-                                                                                                                                   community. Carole Varin (London, Ontario) is now edi-
opment. Cystic fibrosis in Canada is no longer consid-                                                                                                                                      tor in this, the newsletter’s 20th anniversary year.
ered a “children’s disease”. Research has responded to                                                                            The Adult Cystic Fibrosis Committee has
the changing profile of the CF population by examining                                                                          brought new urgency and new energy to the                   The Adult Cystic Fibrosis Committee has brought new
issues like fertility and osteoporosis which are important                                                                                                                                  urgency and new energy to the work of the Founda-
                                                                                                                               work of the Foundation. Indeed the efforts of
to older individuals who have CF.                                                                                                                                                           tion. Indeed the efforts of adults with CF are a power-
                                                                                                                               adults with CF are a powerful motivator to all
                                                                                                                                                                                            ful motivator to all volunteers engaged with the CF
The Adult CF Committee of today grew out of the Foun-                                                                              volunteers engaged with the CF cause.                    cause. And while much remains to be done, we salute
dation’s “Quality of Life” Committee in the 1980s. As                                                                                                                                       all that has been accomplished. The Committee has
part of the Quality of Life Committee’s mandate, a na-                                                                                                                                      clearly delivered on Frank Smyth’s call to persons
tional conference of adults with CF was organized in                                                                                                                                        with CF to provide “ideas and direction to many issues
Bolton, Ontario, in 1988, under the leadership of Sue                                                                         Over the last two decades, the Adult Cystic Fibrosis          that directly affect the quality of life of those with cys-
McKellar (Toronto, Ontario). At this meeting, the idea                                                                        Committee has become the Foundation’s “go-to” source          tic fibrosis”.
for a committee of adults with CF was born. In Septem-        The 1999 ACFC: Back row (l-r): Dale Walsh, Bob Phillips,        for advice on social and “quality of life” issues of con-
ber 1988, Sue McKellar chaired the first ACFC meeting,        Brianna Drake, Paulette Bennett-Boston, Sharon Baptie.          cern to persons with CF, and a major driver of this           Hearty congratulations and deep appreciation to all who
and in January 1989, Frank Smyth (Halifax, Nova Sco-          Front row (l-r): Marc-Éric Desmarais, Jacquie Wiesegger
                                                                                                                              Foundation’s outreach in the domain of social policy          have brought the Adult Cystic Fibrosis Committee to this
tia) was elected as the Committee’s first Chair.                  (now Romano), Debra Mattson, Dennis Bunyan.
                                                                                                                              and social action. The ACFC, whose leaders have in-           point, and to those who are now leading it forward!
                                                                     Absent: Sonia Grenier and Dr. Chris Mody.


                                                        PAGE 4                                                                                                                        PAGE 5
                                         Getting Involved                                                                                                     Experience of a Lifetime
                                         By Karen Gliddon, Chair, ACFC                                                                            By Kelly Sheppard, Atlantic Regional Representative, ACFC

Do you feel there is not enough being done and you’re        screening for CF in Canada. The                               My name is Kelly Sheppard.
wondering how to change or improve our CF care?              ACFC assisted the Foundation in                               I’m 30 years old.                                            A few years after subscribing to Circle of Friends, I no-
                                                             developing a submission to the                                I live in Carbonear, Newfoundland and Labrador.              ticed an advertisement for the Atlantic Vice-Regional
Many adults have had the same question and did not           National Pharmaceutical Strategy                              I have cystic fibrosis.                                      Representative for the ACFC. I saw this as my chance to
have any direction or know who to turn to. In 1988, a        Task Force on the importance of                               I am the Atlantic Regional Representative for the Adult      become more involved in the CF world. After forwarding
concerned group of adults with CF and staff from the         equitable drug coverage. As well,                             Cystic Fibrosis Committee!                                   my resumé and application – patiently waiting to hear
Canadian Cystic Fibrosis Foundation decided to put to-       the ACFC researched and devel-                                                                                             back – I received a call from the CCFF asking if I was
gether the Adult CF Committee (ACFC). Now, with              oped a report on public coverage                              I first heard of the Adult Cystic Fibrosis Committee         still interested in filling the position. I jumped at the
adults bringing forth unknown questions and concerns,        of CF drugs across Canada. Using                              (ACFC) from a fellow Newfoundlander who was involved         chance…and the rest is history! I became the Atlantic
there was a way to deal with new situations and present      the data gathered, we are working                             with the Committee for a number of years. Unfortunately,     Vice-Regional Representative in February 2005. Febru-
this information to other adults, all the while improving    on trying to improve access to CF         Karen Gliddon       at the time, there wasn’t an opening on the Committee for    ary 2007 was the end of my two-year term, but luckily
the “quality of life” for the increasing adult population.   drugs, focusing first on the Atlantic Provinces.              me to apply. Although I didn’t know much about the Com-      enough, I moved into the position of Atlantic Region
                                                                                                                           mittee, I knew that it was something that I wanted to be-    Representative position and am currently serving on the
So you ask yourself, “How do I get involved?”                I’ve been the Vice-Regional Representative, the Regional      come involved in.                                            Committee in that capacity!
                                                             Representative, and now have moved up to the Chair of           To describe my experience of being involved
Each chapter has been asked to have an Adult CF Liaison      the Adult CF Committee. As you can imagine, there are                                                                      Serving on the ACFC has been a very fulfilling role to say
                                                                                                                               with the ACFC is a difficult one, but in a               the least. It has given me the chance to travel across
on their Board/Executive. All you have to do is attend a     many important issues presented to the Committee. We
meeting and state your willingness to represent yourself     go through all items and prioritize the order in which we       sentence “It is an extraordinary experience                Canada, meet new people, and build a network of strong
as the much-needed Adult CF Liaison. As the Chapter’s        will be able to work on issues brought forward.                      that fills me with a sense of pride                   and committed adults with CF who will remain life-long
Liaison, you are responsible for passing along any ques-                                                                                     and purpose!”                              friends.
tions or concerns adults with CF in your area may have       I feel the Adult CF Committee has encouraged much of
to a representative of the Adult CF Committee. You in        the quality care we get from our clinics today. Without       Although I was somewhat of a shy child growing up, I         To describe my experience of being involved with the
turn will be given information about what the Commit-        the help of concerned adults with CF, many of these cur-      had always taken part in Kin Club events and did some        ACFC is a difficult one, but in a sentence “It is an ex-
tee is currently working on and from time to time may be     rent issues would not have been brought forward. We           public speaking at my school all in the name of CF. My       traordinary experience that fills me with a sense of pride
called upon to do a presentation to a local group. Once      ask that you get involved and keep “quality of life” a top    family and I would also take part in all CF fundraisers in   and purpose!”
you are a Chapter Adult CF Liaison, you may consider         issue for people with CF. Without the quality of care we      our area. But all of this just didn’t seem ‘enough’ – for
putting forth your name to be the Vice-Regional Repre-       receive from our CF clinics, the median survival age for      me that is! I wanted everyone to know about CF!              Happy 20th anniversary Adult CF Committee!!
sentative for your region for a two-year term and then       people with CF could still be 21 years of age. Thanks in
step into the Regional Representative role.                  part to the help of past Committee members, there are
                                                             now more adults than children attending CF clinics.
The Nurse Coordinator from my CF clinic, Rosamund,
suggested I apply for the Vice-Regional Representative po-   Losing a brother to CF at the age of six (1969) was devas-
sition back in 2000, and in 2001 I was voted in. I have      tating to our family. David was the oldest of three chil-
been through the process of creating the Foundation’s lung   dren and every mother’s dream: blonde hair, blue eyes,
transplant pamphlet and have helped to promote newborn       and a little charmer. Now as an adult with CF (43 years
                                                             “old” I might add) and also a post-double-lung trans-
                                                             plant recipient, I am grateful for the second chance at
                                                             life and hope to change the lives of those born with CF
                                                             today and in the future. I know my family would like to
                                                             thank the Adult CF Committee and the Canadian Cystic
                                                             Fibrosis Foundation for the quality of care that I receive
                                                             from my CF clinic in Hamilton.

                                                             My dream for the future is to “find a cure or control” for
                                                             cystic fibrosis, but in the meantime, I would love to see a
                                                             world where two siblings that are born with CF can see
                                                             each other get married, become aunts and uncles and
                                                             then go on to see their own grandchildren marry and
                                                             have children. To get involved and make my dream a re-
                                                             ality, please contact one of our Committee members                 Kelly Sheppard prior to her lung transplant,                Kelly Sheppard after her successful double-lung
    Karen Gliddon (middle), with her family in 1968:         listed at the back of this issue.                                St. Michael’s Hospital, Toronto, December 2007.            transplant, Toronto General Hospital, February 2008.
         Dad, David, Karen, George, and Mom.

                                                        PAGE 6                                                                                                                    PAGE 7
                       Opportunities from the ACFC                                                                                                      Accepting Life as an Adult with CF
                          By Nathan Fish, Ontario Regional Representative, ACFC                                                                By Melissa McGoldrick, Western Vice-Regional Representative, ACFC
It’s been five years since I was thrown into my journey        In January 2005, there was an opening on the Adult            I’ve always been the kind of person who is open with the        each person I encounter I
with cystic fibrosis. I can’t imagine what parents must go     Cystic Fibrosis Committee for the Ontario Vice-Regional       subject of my cystic fibrosis. All the way through elemen-      can feel such strength and
through when they are told their child has a genetic con-      Representative position. I was not entirely sure what         tary school and high school I had friends who knew what         persistence to reach a goal
dition that may very well be fatal. But I can tell you what    they did but I decided to apply. During a “tune-up” after     my daily life entailed. It wasn’t until first year of college   and make aware to indi-
it’s like, as a young adult with a career and personal as-     I was diagnosed, I learned so much from the other             that I started having problems speaking out about my            viduals with or without
pirations, to have your whole world turned upside down.        CF’ers on the ward. I thought this would be a great op-       disease. It was a whole new world when I moved into             CF that we exist. I feel
                                                               portunity to get to know others with CF and learn more        residence in September 2003. I was scared of being              empowered knowing that
My initial hospitalization was not in a hospital with a CF     about the condition. I also wanted to share my story of       viewed as a “freak” or having no one to relate to.              I am a part of the CF com-
clinic. The physician at the hospital where I stayed, who      how I was diagnosed and get the information out there                                                                         munity and an element in
had done part of his residency at the CF clinic at St.         for others diagnosed as adults.                               These feelings carried over when I moved from Ontario           the Adult CF Committee.
Michael’s Hospital in Toronto, suspected I had CF. What                                                                      to Alberta in 2006 and I knew something had to be done          I have finally accepted
I learned during those two weeks in the hospital only          Since joining the ACFC I have had the opportunity to be       about it. I wasn’t sure why I suddenly hid in this shell        Melissa McGoldrick –
just scratched the surface and when I was discharged, I        involved in several initiatives. In the spring of 2006, the   but I wanted so badly to explain who I was.                     adult with CF.
                                       spent hours on the      CCFF asked me to speak at an MPP reception at the On-                                                                                                           Melissa McGoldrick
                                       Internet research-      tario Legislature to promote newborn screening for CF         I received a message last year from my doctor explaining        2007 was a terribly busy
                                       ing what I was ac-      in Ontario. Shortly thereafter the Ontario government         he had nominated me to be the Western Vice-Regional             year. I was hospitalized for a couple of weeks to have a
                                       tually dealing with.    passed legislation to start screening newborns for CF.        Representative for the Adult CF Committee. I had no             feeding tube inserted. My life-long struggle with weight
                                       The information I       The Drug Coverage Project has taken off and the ACFC          idea something like this existed, and was really hon-           gain has come to an end and to be completely honest, I
                                       found on the Inter-     and CCFF are concentrating on getting coverage in New-        oured and excited to be nominated.                              couldn’t be any happier with the results! Cormac (my
                                       net was pretty          foundland and Labrador improved.                                                                                              boyfriend) and I bought a house, which we moved into
                                       scary. There was a                                                                    I have been privileged to communicate with some pretty          on December 1 , 2007, and I started a new job. I hope to
                                                                                                                                                                                                            st



                                       lot of information      Currently, we are working on getting updated information      incredible people over the last year, people who are pas-       contribute more to the Adult CF Committee in 2008,
                                       for parents of chil-    on the Federal Disability Tax Credit out to the CF commu-     sionate on spreading awareness about cystic fibrosis. With      and am looking forward to a successful year!
                                       dren with CF and        nity to educate and remind them about this tax benefit. In
                                       adults with CF who      the long term, this may evolve into providing information
                                       had grown up with       on other tax credits related to medical expenses.
                                       the condition. But
                                                                                                                                          ABOUT THE CANADIAN CYSTIC FIBROSIS FOUNDATION
                                       there was very little   I think the ACFC has played an important role in the CF
                                       information for         community and I have enjoyed my involvement with the            The mission of the Canadian Cystic Fibrosis Foundation (CCFF) is to help people with cystic fibrosis (CF). To this
                                       people diagnosed        Committee.                                                      end, the Foundation: funds research towards the goal of a cure or effective control for CF, and supports high qual-
                                       as adults.                                                                              ity CF care; promotes public awareness of CF; and raises and allocates funds for these purposes.
             Nathan Fish

                                                                                                                               ABOUT OUR SUPPORTERS
                        Twenty Years Strong and Counting….
                                                                                                                               Funds are raised through the efforts of:
                   By Kelly Gorman, Manager, Community and Government Relations                                                    • local chapter volunteers, through local fundraisers and the national Halloween glow stick campaign,
 Wow! The Adult CF Committee is celebrating its 20th           to helping others in the CF community, despite their                    FrightLites , sponsored by CARSTAR Canada;
                                                                                                                                                    ®




 anniversary – what a significant achievement. I’m also        own personal circumstances and/or professional obliga-              • members of Kin Canada;
                                                                                                                                   • local chapter volunteers and community supporters, through the Great Strides™ walk, sponsored by Zellers,
 happy to say that in 2008, I’m celebrating my fifth an-       tions. Committee members are hard working and caring
                                                                                                                                       Siemens, American Airlines, and Kin Canada;
 niversary (well, minus a one-year maternity leave) of         individuals, who look beyond their own personal situa-
                                                                                                                                   • college and university students who participate in the annual Shinerama fundraiser;
 working with the Adult CF Committee. During my time           tions to understand and address the many complex                    • members of Advocis;
 with the Foundation, I have had the privilege and hon-        challenges and obstacles that individuals with CF often             • Zellers, which sponsors many CCFF chapter events and provides monetary support for CF research and
 our of not only working with, but also getting to know        encounter. These individuals continually work towards                   treatment programs;
 many of the wonderful members of the Adult CF Com-            improving the quality of life for all persons with CF.              • members of la Chambre de la sécurité financière;
 mittee. This experience has been inspiring and reward-                                                                            • Mac’s Convenience Stores in Ontario which collect donations for the CCFF year-round; and
 ing – thank you!                                              The entire CF community has benefited from the dedi-                • Tens of thousands of individuals, groups, and corporations.
                                                               cated and committed efforts of all Committee mem-
 Over the last few years, I have come to realize that          bers, past and present. Congratulations! Keep up the            In addition, the Foundation is very fortunate to have the internationally acclaimed singer Céline Dion as its Celebrity
 adults with CF and health care professionals join this        excellent work, and I look forward to working with you          Patron, Mila Mulroney as Honorary Director, and Canadian Olympic Skier Ken Read as a special friend.
 Committee because they are motivated and committed            to continue building on your many successes.


                                                         PAGE 8                                                                                                                       PAGE 9
    Paulette Boston - A Positive Outlook on Cystic Fibrosis                                                                                   Reflections of an Adult with CF
                 Viewpoint from a Previous Editor of Circle of Friends and                                                                                                     By Frank Smyth
                            Past Adult CF Committee Member                                                                                                   Edited by Carole Varin,        Editor, Circle of Friends
                   By Cheryl Corcoran, Vice-Regional Representative, Atlantic Canada                                                                      Frank Smyth was instru-            drafts to Cathleen to see what she thought. She would
                                                                                                                                                          mental in organizing the CF        always say, “Whatever you want to talk about.” I began
I had the pleasure of speaking with Paulette Boston, a         most memorable story was for her, Paulette stated that                                     Adult Group, which resulted        to think they either had a great deal of trust in me, or
57-year-old Nova Scotian lady who was diagnosed with           her son, Barry Bennett, had written a story called “Dri-                                   in one of Canada’s most suc-       they had all lost their minds! I will leave them those op-
cystic fibrosis in 1951, at the age of nine months. Paulette   ving with the Windows Down”. The article was a child’s                                     cessful provincial CF work-        tions. This is a real highlight in my life, or at least I hope
is married to Wayne and has two children of her own,           view of a parent living with cystic fibrosis.                                              shops. He was dedicated to         it will be – we will see how the next few minutes go!”
and she is proud to say that she is a grandmother as well.                                                                                                and participated in all levels
For anyone living with cystic fibrosis, this is an achieve-    Paulette indicated that she believed then, and still be-                                   of the CCFF from his local         The address goes on and touches on various topics such
ment all in its own right. Paulette informed me that           lieves today, that the tone of the articles in Circle of                                   chapter to the national            as developing strategies to deal with the devastating re-
when she had her first child at age 20, she was the first      Friends needs to be both supportive and positive. She                                      Board level, and made              alities of CF, becoming involved with the CF cause,
person in Canada who had knowingly become pregnant             noted that Circle of Friends is a very important tool in                                   major contributions to             measuring our health against those around us, grieving
and given birth to a child, despite having cystic fibrosis.    relaying information to those living with CF, as well as to                                fundraising efforts and im-        the death of friends and maintaining one’s health.
In fact, she was the first person with a previous diagnosis    friends and family. She referred to Bryan Iverson, the                                     proving the quality of life for
of cystic fibrosis to become a grandmother! Paulette con-      creator of Circle of Friends, as someone who “remains in                                   those with cystic fibrosis.        Here’s an excerpt of the address, where Frank talks
siders her experiences with cystic fibrosis to be positive     the hearts and memories” of many “for being a remark-                Frank Smyth           Frank passed away in 1995.         about maintaining and valuing one’s health…
and attributes this to the support she has received from       able and unbeatable guy who set the standards” for Cir-
both her family and friends. Paulette attends her cystic       cle of Friends. Paulette stated that she believes that over   Frank’s profound influence touched the lives of many of         “For me, maintaining health means a routine. Rest,
fibrosis clinic in Halifax every three months or so for        the years, Circle of Friends has helped to dispel a lot of    his friends and colleagues. The first CCFF Web site, cre-       knowing your limits, all the treatment, it’s essential – to
check-ups, or more frequently, as needed.                      mysteries about the disease, as those living with CF tell     ated by Phil O’Hara and other friends and colleagues            me. Health is relative, and for some it can mean the
                                                               their personal stories. Often what seems unique to one        from Dalhousie University in Halifax, Nova Scotia, was          ability to function daily with minimal treatment. For
Paulette keeps herself busy in her retirement by raising       individual in terms of a health-related issue will prove to   dedicated to Frank’s memory.                                    others it means going one year without being in hospi-
hedgehogs and bowling. In the past, she has been in-           be common among the majority, therefore letting the in-                                                                       tal. For others it means going a few weeks without
volved with the Adult CF Committee, where she served           dividual know that they are not alone in their situation.     On Saturday, April 30th, 1994, Frank Smyth delivered            being in hospital. Coping means keeping the focus on
as Vice-Regional and Regional Representative for At-           Paulette was quick to point out that she continues to         an address to the Trustees of the Canadian Cystic Fibro-        health, not on illness. Illness is an undeniable part of
lantic Canada, and editor for Circle of Friends. She even      enjoy reading the entertaining, informative and creative      sis Foundation at the CCFF Annual Meeting. This power-          having CF, but illness should make us value health, and
attended a meeting in Berlin in 1999 as representative         stories in current Circle of Friends editions.                ful and inspirational address touched on many                   appreciate whatever abilities we do have.
for the International Association for Cystic Fibrosis.                                                                       important topics and began like this…
                                                               When I asked Paulette what advice she could offer for                                                                         Life is indeed precious. Illness makes me appreciate it
                                                               those currently living with cystic fibrosis, she responded
      She has tackled her disease head-on,                     by stating, “prepare for the future” (which will hopefully
                                                                                                                             “I wish to thank the Executive and Board of Directors of        more, and helps put things in perspective. Stresses at
  leading a very full life and doing, in her own                                                                             the Canadian Cystic Fibrosis Foundation for giving me           work, the dishwasher doesn’t work, the car needs a re-
                                                               be a long and healthy one) because “your life may not be      the opportunity to speak to you today. I am not all             pair, all cause me stress on occasion. By focusing on ill-
       words, “most of what she wanted.”                       as short as you think.“ She did not, in any way, mean this    knowing about CF and its issues, nor do I have all the          ness and health, it allows me to centre again on what is
                                                               to be negative. Instead, she used herself as an example,      answers. I do have a life of experience with CF, and a          really important – life, and quality of life. Friends, family,
                                                               stating that if she had known at the age of 20 that she       number of years with the CF Foundation. I am 34 years           community, is what make people special – not how big
Throughout my conversation with Paulette, I indicated          would have lived to be the age she is now, she would have     old, married and have a two-year-old son – and a dog.           your house is or what kind of car you drive. It may sound
that I wished to gain some insight on her previous experi-     prepared better for her future. Indeed, the life expectancy   I have worked with my chapter for about 15 years, and           trite, but it is true. When you can’t take health for granted,
ences as a representative on the Adult CF Committee and        and progress in the development of medications and            have served as our Chapter Treasurer, Secretary and             you do appreciate what is really important in life.”
as editor for Circle of Friends. Paulette was kind enough to   treatments, leading to better and longer lives for individ-   Vice-President (for life it seems). I am active with our
share with me some of her memories and provided hope           uals living with CF, were just some of the things Paulette    clinic staff on an adult advisory group. I was the Chair        Frank then touches on issues such as hospitalizations,
for the future for all of those living with cystic fibrosis.   cited as key advancements in the fight against CF.            of the CF Adult Committee for two years, and a member           pulmonary function, blood gasses, oxygen, transplanta-
                                                                                                                             of the Board of Directors for about the past five years.        tion, organ donation, life expectancy… All of the things
Paulette said that when she was involved with the Adult        Paulette is truly an inspiration for anyone. She has tack-                                                                    that people with CF can relate to and hear of throughout
CF Committee, conferences that she attended took place         led her disease head-on, leading a very full life and         I feel very fortunate, slightly intimidated, and perhaps        their lives – things that can have negative effects on our
in venues such as Victoria, Toronto, Moncton, Montreal         doing, in her own words, “most of what she wanted”. She       even lucky that the Executive have asked me to address          emotional well-being. I believe that Frank summed it up
and Halifax, to name a few. Paulette said that above all       noted that she has had some hospitalizations, and some        you today. In a way I hate to use my luck this way, per-        perfectly in one sentence, “We are people first, and have
else, the friendships that she made at these conferences       scary times when she thought that “the end” was near,         haps I should save it for the 649 draw tonight! I was           CF second.”
helped form her fondest memories.                              but overall, she’s been able to remain fairly active. She     asked to address the trustees – and that was about the
                                                               believes that she is where she is right now because she       only criteria I was asked to meet. Cathleen (Morrison)          In his address, he also talks about the Foundation, volun-
As editor of Circle of Friends, Paulette has had the op-       has never believed in the words “can’t” or “won’t”. I be-     very kindly offered a few topics to get me started. So, I       teers, chapters and clinics…and the importance of getting
portunity to share in the creation of many articles,           lieve that she can and will continue to be an inspiration     started to make a few notes, and I sent a couple of             involved!
penned by herself and by others. When asked what the           to us all.
                                                                                                                                                                                                                                    Continued on page 14
                                                        PAGE 10                                                                                                                     PAGE 11
                                             Twenty Years of the Adult CF Committee
1988. First National Conference of Adults with cystic fibro-                                                                                    2004. Adult CF Clinic established in St. John’s, NLFD.
sis. Held in Bolton, Ontario, this meeting was organized by
the Quality of Life Committee, and chaired by Sue McKel-       a                                                                                Members of the Adult CF Committee, under the leadership
                                                                                                                                                of Chair, Dale Walsh, along with the CCFF were instru-
lar. The outcome of the conference was a recommendation                                                                                         mental in advocating for the creation of an adult CF clinic.
to CCFF Board of Directors to form a standing committee
reflecting the needs and interests of adults with CF. The                                                                                       2005. James Tapankov, Chair of the Adult CF Committee,
priorities of the committee were established as follows: ad-                                                                                    delivered an oral report at the CCFF Annual Meeting and
vocacy, newsletter, and treatment issues.                                                                                                       Conference. This becomes part of the program for future
                                                                                                                                                Annual Meetings.
1988. First meeting of the CF Adult Committee held in
Toronto on September 19 . During this meeting it was con-
                         th
                                                                                                                                                2006. First live Web cast of Day for Adults with CF from
firmed that this committee would take over the mandate of                                                                                       Mississauga, Ontario. Adult CF Committee brochure de-
the Quality of Life Committee.                                                                                                                  veloped and distributed to CF clinics and chapters.

1988. The premier edition of Circle of Friends published in                                                                                     2007. ACFC completed and presented to the CCFF Board
December. Editor, Bryan Iverson.                                                                                                                of Directors a comprehensive report detailing drug cover-
                                                                                                                                                age of select medications for CF in all ten Canadian
1989. CCFF Board of Directors approves a motion at the                                                                                          provinces. The report will guide the Foundation in its ad-
February meeting to have the Chair of the Adult CF Com-                                                                                         vocacy efforts around access to and coverage of necessary
mittee sit as a voting member on the Board.                                                                                                     CF medications.

1992. Guide to Services and Resources for the CF Commu-                                                                                         2008. 20 Anniversary of the ACFC. Special edition of Cir-
                                                                                                                                                              th



nity revised and updated by the Adult CF Committee. This                                                                                        cle of Friends produced, under the leadership of Editor, Ca-
publication becomes the responsibility of the ACFC.                                                                                             role Varin. Members of the ACFC plan the Gala dinner for
                                                                                                                                                the CCFF Annual Meeting. The priorities of the committee
1994. Frank Smyth, past Chair of the Adult CF Committee,                                                                                        remain advocacy, newsletter and treatment issues.
                                                               b
                                                                                                d
delivered an inspired and powerful speech to Trustees of
the Foundation during the Annual Meeting.                                                               a. Participants at the second National Adult CF            Anna Tsang, Louise McNaughton (CCFF staff), and
                                                                                                        Conference, Lake Simcoe, 1990.                             Karen Gliddon. Absent: Sandra Kravec, Colleen
1997. First Annual Day for Adults with CF held in conjunc-                                                                                                         Faulkner, and Debra Mattson.
tion with the Annual Meeting.                                                                           b. ACFC, 1993. Back: Rod Morrison (CCFF staff),
                                                                                                        Roger Barnard, Michael Burrill, Denis Rouault,             e. ACFC, 2006. Nathan Fish, Karen Gliddon, Paul
                                                                                                        and Dr. Liz Tullis. Front: Julie Bishop, Marguerite        Underhill, Sharon Wiltse, James Tapankov, Dr.
1998. ACFC worked with members of M/SAC on an infec-                                                    Plante, Tammy Hewey, and Janice Boston.                    André Cantin, Carole Varin, and Cheryl Corcoran.
tion control policy for the Foundation. A questionnaire to                                                                                                         Absent: Kim Black, Julie Gagnon, and Jennifer
gauge feelings of adults with CF toward the policy was de-                                              c. Roy Romanow breathing through a straw at                Gagnon.
veloped with the assistance of the ACFC.                                                                hearings for the Romanow Commission on the Fu-
                                                                                                        ture of Health Care in Canada, April 2, 2002.              f. ACFC, 2007. Patrick Brothers, Cheryl Corcoran,
2000. Thanks to leadership from the ACFC and other                                                                                                                 Julie Gagnon, Kalyn Steel, Karen Gliddon, Kim
Foundations leaders, the Federal Disability Tax Credit                                                  d. ACFC, 2003. Back: Dale Walsh, James                     Steele (CCFF staff), Jeremy Tompkins, and
changed to include individuals requiring “life sustaining                                               Tapankov, Wally Speckert, and Dr. Chris Mody.              Nathan Fish. Absent: Carole Varin, Kelly Shep-
                                                                                                        Front: Valérie Gosselin, Marie-Hélène Roger,               pard, Melissa McGoldrick, Dr. André Cantin, and
therapy”. This change was the result of years of advocacy
                                                                                                        Cheryl Corcoran, Josée Chiarot (CCFF staff),               Sharon Wiltse.
by specific adults with CF, the ACFC and the CCFF.

2002. Adults with CF appear before the Romanow Com-            c                                    e                           f
mission on the Future of Health Care in Canada in the
cities of Victoria (Debra Mattson), Toronto (Chris
MacLeod) and St. John’s (Dale Walsh), and had an impact
on the Commission with their powerful presentations.

2003. When a parent has CF: Explaining your illness to
your child first published. The concept for the brochure
came from Bob Phillips, Chair of the ACFC. Members of the
ACFC, in particular, Jacquie Romano during her term as
Chair, contributed to the development of the brochure.


                                                                   Photo credit: Chris Gainor
Reflections of an Adult with CF, Continued from page 11

“We need all our chapters, volunteers and clinics to         come involved in the Canadian Cystic Fibrosis Foundation.                              A Life Resume –
work with the Foundation so that whatever we do, we
are well armed with the information and evidence to
                                                             We often are not fundraisers, but as I have mentioned, to
                                                             some extent we are role models. Speak, visit, offer your
                                                                                                                                            What Was, What Is, What May Yet Be
make our case successful. We are in the company of           opinion, but try and contribute. If you want to know what             By James Tapankov, Western Regional Representative, 2001-2003, Chair, 2004-2005
many other diseases also waiting and working towards         the CF Foundation has done for you lately – if you get the
new treatments or a cure. We must not lose our heads         newsletter, attend a clinic, go to an adult conference, get     December 7th, 1973: my birthday
now and undo the reputation we have earned as being          better treatments, or have your drugs or equipment paid         1978: kindergarten
one of, if not the top charity in Canada for being well      for, it is probably due in some measure to the efforts of the   1981: weighed in at school at less than most of
run, well organized, fiscally responsible, and a world       thousands of volunteers of the CF Foundation.                           the kids in class, including the girls
leader in research.                                                                                                          1983: ten years old and counting
                                                             Any relationship is a two-way street. I do not feel that        1985: first time I realized what having CF really
While the search for a cure continues, and while we are      the CF Foundation owes me anything merely because I                     meant when my brother explained it to
aware of new treatments in the development stages,           have CF. It is a partnership. For their part, the CF Foun-              me
people continue to live and suffer with CF. If a cure        dation volunteers raise money that funds research,              1987 : first year I used inhaled Tobramycin
came tomorrow, there would still be a generation of          funds clinics, promotes public awareness, funds trans-          1988: first time someone really got angry at me
people who have been ravaged by CF to some degree.           plantation research and many other areas essential to                   for saying I was going to die – one of my
Our Foundation and its members must continue to keep         my care and well being. For my part, I do what I can to                 first girlfriends, ironically
one eye on the future while still living in the present.     contribute to the CF cause – whatever that might be at          1991: graduation and off to university
                                                             any given time, depending on my health and what needs           1992: year I decided that if I lifted weights,
As I briefly stated earlier, the issues faced by CF adults   to be done. I encourage my colleagues to do the same.”                  stayed fit and ate well, I might just have a
are as much societal as they are medical. Technology                                                                                 chance - gained ten pounds a year over
without social conscience does not serve our goals as a      Like Frank, I encourage you all to get involved on some                 next four years and have kept it on since
                                                                                                                             1993: 20 years old and counting                                      James Tapankov and his family
Foundation. If we make great strides to get our children     level. You (people with CF) are the greatest advocates –
to adulthood only to have them face social assistance,       you are the voice of CF. Like a very wise person (Sharon        1994: year I met my future wife, Nicole and
problems with employment, problems with drug cover-          Wiltse) once said, “You live the life – only you can tell               realized I wanted to marry her when I
age, then we have failed. We cannot assume that a cure       the real story.” Frank’s address is very powerful, inspi-               told her about CF, and what it meant for her as my wife, within the first two weeks
for CF means the next generation will not face these is-     rational and honest. I did not have the privilege to hear       1995: first time my brother, Alex, collapsed from lack of oxygen and had to quit work
sues, and not forget that people with CF will continue to    him speak (although I really wish I could have) – I did         1996: first year as a teacher in Wabasca, Alberta
face these issues for at least the next decade or more.      have the honour to read the address in its entirety on the      1997: year I married Nicole and changed everything
                                                             CCFF website. It encourages hope…and sometimes,                         year I started using Pulmozyme
I encourage people with CF to become involved with           that’s all we have. I would encourage you all to read it.       1998: moved to Barrhead, Alberta for new job and, as it turns out so far, our home
some aspect of the CF cause. Whether it is being your                                                                        1999: death of Alex in August – my first real taste of mortality
chapter treasurer, speaking at CF functions or just meet-    It only makes good sense to allow Frank to wrap up this         2000: year my daughter, Victoria, was born and changed everything again
ing the people in your chapter. Like it not, if you are an   story! Take it away Frank…                                      2001: first year I joined the ACFC as Western Representative
adult with CF you are a role model, and a source of hope                                                                             year I got an apology at my ten-year high school reunion from person who got angry at me in 1988
for others with CF, parents of CF children, friends,         “I have heard it said it should be a goal in life to leave      2002: year my son, Ryan, was born and changed everything once again
everyone involved in the fight against cystic fibrosis.      the world in a little better state than when we came into       2003: represented CCFF at Cystic Fibrosis Worldwide in Belfast, Northern Ireland
                                                             it. All the people I know, have known, and don’t know                   30 years old and counting
As a person with CF, you also can offer a unique per-        that are committed to the CF cause are shining exam-            2004: became chair of ACFC
spective on issues. As new treatments are developed,         ples of that ethic. If the world were full of people like the           represented CCFF at Cystic Fibrosis Worldwide in Birmingham, England
and new issues are identified, the view of people with       volunteers in our CF community, our world would in-             2005: life is good and seems to be going well for me as a person with CF
CF is essential. The CF Adult Committee is one tool for      deed be a much better place to be.                              2006: year my son, Adam, was stillborn and changed everything once again, and in a very different way
the CF Foundation to have that viewpoint, but it is not                                                                      2007: the year I realized being a husband and father are my most important jobs, and that my
the only way we can contribute.                              I am really going to miss annual meetings. I can’t tell you             condition is defined by me, not the other way around
                                                             how inspirational it is for me to come here, and see so         2018: Victoria turns 18 and starts her own journey towards a similar realization
The collaboration this year to have the Foundation An-       many people gathered together for only one purpose – to         2020: Ryan does the same
nual meeting and a CF Adult Conference run consecu-          help other people. That is truly an inspiration for me.         2022: our 25th wedding anniversary
tively will serve as a model for future events. CF adults                                                                    2023: my 50th birthday
get a perspective on the Foundation they may not oth-        Another saying I have heard is, “I wouldn’t trust that          2025-2030: future kids possibly have the same realization
erwise be exposed to, and other CF families and volun-       person with my life.” Well, I do trust all of you with my       2047: our 50th anniversary
teers get to meet individuals with CF who are coping         life. I know that all of you are doing everything you can               play with grandkids, or great grandkids, as situation allows
and living productive lives.                                 to help people with CF live as long and as well as they         December 7th, 2073: I turn 100, and celebrate with family, friends and the entire world as the first
                                                             can. Thank you.”                                                        known person with CF to reach that age
Over the last ten years, more adults with CF have be                                                                         Day after: visit Alex, Adam and anyone else waiting for me with a happy heart and one last, deep breath
                                                                  To read Frank’s complete address, please visit
                                                                     www.cysticfibrosis.ca/page.asp?id=186
                                                       PAGE 14                                                                                                               PAGE 15
               My Journey on the Adult CF Committee                                                                                                        Remembering the Past,
                                                                                                                                                           Dreaming of the Future
                    By Debra Mattson, Western Regional Representative, 1998-2000,
                                 Editor, Circle of Friends, 2000-2003
When I reflect on my time with the Adult CF Committee,                                                                                    Thoughts on the 20th Anniversary of the Adult CF Committee
as Western Regional Representative and editor of Circle
of Friends from 2000-2003, I’m not sure I could say                                                                                             By Wally Speckert, Ontario Vice-Regional Representative, 2000-2001,
what impact I’ve had on the Adult CF Committee; you’d                                                                                                       Ontario Regional Representative, 2001-2003
have to ask those who knew me. But, I can tell you what
impact the Committee had on me.                                                                                                My name is Wally Speckert. Being able to share a few           bilities and on my own personal time, I have also had the
                                                                                                                               thoughts about the Adult CF Committee’s 20th anniver-          opportunity to travel to a great many places in North
I can tell you that I remember my first meeting in                                                                             sary is quite a milestone.                                     America, Europe and a few places in Asia.
Toronto as the newly elected Vice-Rep, which was not
only my first committee ever, but my first CF committee.                                                                       I will start by introducing myself: I was born in Septem-      Despite the apparent success, I did make a mistake in
I remember walking into a room wearing my suit, armed                                                                          ber 1960, and diagnosed in May of 1961 with what later         my personal life which has proven to be more of a set-
with a briefcase filled with ideas and paperwork and a                                                                         would be genotyped as homozygous deltaF508 CF. I had           back in my life than CF. Many CF people find partners
new fancy schmancy pen. I walked in late, I remember,                                                                          wonderful, supportive parents, and am very close to my         who are loving, hardworking, energetic and supportive.
and scanned the room to see where I should sit. I have a                                                                       younger brother (CF carrier). I excelled in school despite     The person I found was the opposite. My “sentence”
vivid memory of the cepacia and non-cepacia tent                                                                               the challenges of living with CF, and was also very active     ended in 2003. In hindsight though, perhaps always
cards, placed in the centre of the round tables, with ten                                                                      in sports (hockey, baseball, soccer, weightlifting, track      having to rely on myself, and to be the partner with the
                                                                             Debra Mattson, and her dog Sky                    and field). In fact, the only thing that kept me from mak-     energy and drive kept me strong? Fortunately, I always
or so people sitting at each table, looking up, wondering
“Who the heck is this?” I remember stopping in my               could never talk about before. The gift of friendship, un-     ing it to the NHL was talent.                                  had, and continue to have, the pleasure of being a very
tracks. I didn’t know where to sit. Tent cards with writ-       matched in intensity anywhere else in my life.                                                                                devoted and active dad to our two children who are now
ing usually say “reserved” or “head table”. I had never                                                                        I studied biochemistry at Queen’s University – to learn        young adults. I have also since met a wonderful lady,
seen cepacia before. I had never heard of it. My logic          The journey, and the gifts that came with it, are never        about CF, in hindsight, then went on to do an MBA (Fi-         and finally found real love and the joy that a loving,
told me that if it said “non” and I didn’t know what cepa-      forgotten. They are tucked away, called up when I feel         nance). I joined the Bank of Canada in September 1987,         thoughtful and intelligent partner can bring to a rela-
cia was, then I guess I should sit at the table with a non-     that maybe I’m not really doing all that much with my          hoping my health would hold up so that I could “last” for      tionship. Your CF will never keep you from finding
cepacia tent card. So I did. And the journey began.             life after all. But maybe I came close to doing enough, at     five years. I am fortunate to be starting my fifth five-year   someone very special to share your life with!
                                                                least then.                                                    period. I have worn several hats during my career there.
The journey where I learned how very little I knew but                                                                         I most enjoyed taking risk and trading currencies and          Now that the “bio stuff” is out of the way, I have a
how very much I wanted to understand. Where I learned           When I hear the word ‘committee’, I think of the suits         gold through the 13+ years I spent in the trading room         melancholy feeling as I sit here at my keyboard and con-
that I hadn’t experienced even a quarter of the crap that       and briefcases and teleconference calls and fancy              and dealing with financial market participants. Cur-           sider what to write for this anniversary edition of the
so many of my “soon-to-be-friends-with-CF” had experi-          schmancy pens. But when I think of the Adult CF Com-           rently I am “back to my roots”, managing a group of ten        Adult CF Committee. I was not at the first CF adult con-
enced; from hospital stays, to IVs, to diabetes, to infertil-   mittee, I think of so much more than that. There was –         PhD researchers who try to understand how financial            ference, organized by the newly formed Adult CF Com-
ity, to inadequate drug coverage, to MRSA, to isolation,        and I imagine still is – far more than “the business of get-   markets work, instead of more important matters like           mittee, held in Kananaskis, Alberta in 1989, but was one
to having no CF clinic in their home town, to waiting on        ting things done”. There is an unspoken vibe, a promise        the mysteries of CF. Through my job, my CF responsi-           of the twenty or so adults with CF who gathered at Lake
a list for new lungs, to a ‘little’ bacteria called cepacia.    and a not-so-secret, secret: “we do this to connect, we do                                                                    Simcoe, Ontario for the second meeting (before we un-
                                                                this to survive”. While we could never all be the same, or                                                                    derstood the potential cross-infection risks of close in-
The journey where I witnessed true bravery, watching            want to be the same, when we Adult CF Committee mem-                                                                          teraction), which took place around September 15, 1990.
people survive CF, and saying goodbye to those who did-         bers get together and talk, we finish each other’s sen-                                                                       I remember the date because I had my parents and fam-
n’t. The journey where I watched friends commit endless         tences, we say things that others might not even mention,                                                                     ily with me, and my second child, Katy, celebrated her
amounts of time and energy, that maybe they didn’t really       we understand the insecurities and where they come                                                                            first birthday during the conference. I am not sure if any
have, to thinking and talking and changing what wasn’t          from, feel the same guilt (sometimes, only sometimes)                                                                         of the other attendees are still alive; however – so much
right, whatever that might be. The journey where I was          for being alive when our friends aren’t and we never for-                                                                     has improved since then – I expect most of this year’s
treated to many, many gifts. Where I received stories for       get that if we can give our time and energy, then we will.                                                                    adults gathering in conjunction with the AGM to still be
Circle of Friends, shared in trust to a community that                                                                                                                                        around 20 years from now!
could no longer share in person. Gifts of compliments sent      I think that if I walked back into the Committee meeting
to me by complete strangers, to “keep up the good work.”        room today, I’d probably have to start over again, being                                                                      Remembrance has a special meaning for many adults
The gift of being able to help when a mother called me and      out of the loop and not sure what the tent cards would                                                                        with CF. We have seen CF, the silent enemy, take away
asked me to help her understand her own teenaged                have written on them now. But I’m sure that passion,                                                                          so many of our friends. Personally, over the years I have
daughter with CF. The gift of gratitude when a woman            commitment and goodwill would still remain. What a                                                                            lost just over 50 people with CF (PWCF), whom I con-
heard my name called at a CF clinic appointment and told        gift I was given to have been on the Adult CF Committee.                                                                      sider friends. CF has been like a war: the battle strate-
                                                                                                                                Wally Speckert with part of the Adult CF Committee,           gies– meds and treatment regimes – change; weapons –
me that she was grateful for Circle of Friends because she      What a gift to us all – having such a group. Thank you          2001: Dale Walsh, Anna Tsang, Debra Mattson, Karen
could now talk to her husband about all this ‘stuff’ they       for 20 years. Here’s to 20 more!                                                                                              transplantation, more potent antibiotics, more concen-
                                                                                                                                        Gliddon, Wally, Marie Hélène Roger.
                                                                                                                                                                                              trated microspheric enzymes, Pulmozyme, the vest etc. –

                                                         PAGE 16                                                                                                                       PAGE 17
                                                                been a sage in a previous life! Frank was on the initial      and door-to-door sales of Christmas cards. I am still a
                                                                Adult CF Committee, and later stood as Chair. He also         member of the Ottawa CF Chapter, where I was Treas-
                                                                represented Nova Scotia as Regional Director on the           urer for five years, am currently Adult CF Liaison and
                                                                Board of Directors, almost right up until his final year of   have been involved in fundraising through a variety of
                                                                life. He was leaving the Board just as I joined. He told      activities including July 1st face painting, coupon book
                                                                me to “Watch how they handle the finances, Wally –            sales, SnoPitch, Bowl-a-thon and a CF-Senators Gala. I
                                                                they will benefit from having someone on the Board with       have served as Chair of the Ontario CF Association for
                                                                your professional expertise and finance experience to         four years, and was on the Board of Directors as the Re-
                                                                help out!” Frank made a final speech in his last AGM          gional Director for Eastern Ontario for a total of nine
                                                                (1994) which summed up “the CF adult perspective” –           years, where I focused on bringing proper financial gov-
                                                                you can find a shortened version on page 11 and a full        ernance and efficiency issues to the Foundation. I was
                                                                version on the CCFF Web site. His wisdom and perspec-         one of the two inaugural M/SAC stakeholders – which
                                                                tive always inspired me.                                      allowed me to use my science background and interact
                                                                                                                              with our researchers directly in allocating funding. It
                                                                Bryan Iverson – such a talented person. Bryan was a           was probably the most rewarding of any of my CF activi-
                                                                pharmacologist by trade, although CF kept him from ap-        ties over the years.
                                                                plying his degree to the fullest; however, he quietly gave
                                                                so much to the CF cause. He too was on the original           Personally I have also had a lot of direct PWCF involve-
                                                                                                                                                                                             Wally Speckert, right, with his children Katy and Tom
                                                                ACFC, and he started Circle of Friends. He was an hon-        ment. I attended and loved “Crippled Children’s Camps”
                                                                ourary member of Kin, and active in the Foundation as         and then CF-only Camp Couchiching. I met my child-            20 to 30 CF adults up to the early/mid 1990s to a com-
          Wally Speckert and his partner, Helen
                                                                well. I had the privilege of serving on the Board while he    hood best friend at camp, Richard Bassan. Unfortu-            mittee with a mandate and bylaws, which focused on an
improve. Today’s new young CF soldier can realistically         was there for a term – it was his dream to have become        nately, Richard picked up cepacia later at “Couch”, and       annual “Day for Adults” in conjunction with the CCFF’s
dream of a time of peace in his or her medical future,          the first Board President with CF. Although his health        passed away in his teens, so I saw the results of cross-in-   Annual General Meeting, and Circle of Friends as a vehi-
when we can stand united in victory over CF. Yet until          was never good in the years I knew him, the value of his      fection at an early age.                                      cle of communication to the adult CF community. Circle
that day comes, legions of powerful new infections such         many gentle and thoughtful contributions made him a                                                                         of Friends was important then in the “pre-internet and
as B. cepacia and MRSA continue to attack and divide            huge presence during his years with the CCFF.                 I was one of Canada’s two representatives to the first        Google era”, and I believe continues to be so in an era
us. The 20 years since the discovery of the CF gene in                                                                        ever International Adult CF Committee meetings, held          where cross-infection concerns minimize our contact
August 1989 have gone by quickly. Yet the most immedi-          Ron Moore – there may never be a more amazing CF              in Belgium. I have always been interested in the Interna-     with other PWCF.
ate result of that finding – hope – still remains, and          athlete. Ron had deltaF508 CF, yet he owned two bike          tional CF group and its newsletter. I also served one
grows stronger. The advances on the medical front since         shops, and competed in Ironman triathlons up until his        term as Canada’s rep to IACFA, which, symbolic of the         So CF has had the expected significant impact on my life.
that day have been many, and will someday lead to a de-         40s. If anyone had the chance to survive 50 years with        transition of people with CF from “CF Adults to Adults        However, my partner Helen told me that it is probably
feat of the lethal aspects of the condition, but it will take   full-blown CF from birth and still look like a fitness in-    with CF”, joined with the “regular” international group       this impact which has also shaped me into the thought-
a generation to heal and cure the past scars CF will have       structor, I thought it would have been Ron. His sudden        to become CF Worldwide.                                       ful person with the values and outlook that she has fallen
left behind. Like war heroes, I hope we never forget            death was a shock, and reminded me of the value of liv-                                                                     in love with. My dreams, with or without my CF, remain
some of the many wonderful CF adults who have served            ing in the present. We shared our interest in competition     I have attended, been involved with and served on the         the same: to be there for my parents as they grow old; to
the CF cause in their own selfless ways.                        in life. For better or worse, our personal lives mirrored     Adult CF Committee over the past 20 years. Michael            spend years of joy and to be a loving and supportive
                                                                as well. I remember visiting Ron in Edmonton in 1997.         Burrill and I are responsible for the movement of the         partner; and to dance at my children’s weddings. I am
I have my own special CF adult heroes… and I would like         We went to his gym and had a badminton game. No one           group from an annual get-together of roughly the same         confident that I will live those dreams!
to mention a few PWCF who have helped to shape and              else was there to watch us, but we played like it meant
inspire me and countless others over the years. I believe
their memory has played a role in my own ability to have
                                                                everything… the best two-out-of-three contest lasted
                                                                well over an hour, and it came down to a final point in                           Cystic Fibrosis 2007 Achievers’ Awards
soldiered on thus far. (I’ll drop the war analogy now…)         the end. We both knew the significance of what two “old        Individuals who applied for the Cystic Fibrosis 2007 Achievers’ Awards, sponsored by Solvay Pharma Inc.,
                                                                men with CF” were able to accomplish that day.                 were asked to describe a special accomplishment. The top three entries in each category were awarded a
Bob Giesler – When I became a teenager, I had never                                                                            $500 cash prize. Congratulations to all of the winners!
seen a “healthy” young adult with CF. I attended the first      I have been privileged to have met so many people with
                                                                CF as well as wonderful “non-CF people” who were in-          Education                                Creativity                              Life Accomplishments
ever all CF camp at Lake Couchiching in 1973. Bob was
                                                                volved in some way with the CCFF. My mother is the            Ana Dujakovic, 17, Dartmouth, NS         Erica Van Dorp, 12, Sherwood Park, AB   Keith Shaw, 50, Penhold, AB
about 18 then, looked like a bodybuilder and played high
                                                                world’s longest standing continuous CF fundraiser – she       Janelle Funk, 18, Steinbach, MB          April Johnson, 23, Regina, SK           Lyne Lacroix, 41, Gatineau, QC
level competitive hockey. Bob went on to be the first per-
                                                                joined the Toronto Chapter in May 1961, then helped           Brenda Chambers-Ivey, 43, Kenora, ON     Andrée-Anne Fournier, 12, Haut-         Silvana D’Onofrio, 50, Verona, ON
son with CF elected to the CCFF Board of Directors as a
                                                                found a Peterborough Chapter where she continues to                                                    Paquetville, NB
Regional Director (for Northern Ontario). Bob inspired
my own dreams of an attractive future.                          raise money and awareness although she is in her 70s.
                                                                Her example of dedication to my health has had an enor-       Leadership                               Sports
Frank Smyth – I wish everyone could have met Frank.             mous impact on my attitude and will to survive.               Nancy Kernaghan, 27, Hamilton, ON        Graham Young, 14, Stillwater Lake, NS        For more information, visit
He was gentle, kind and very wise. His honest and               My personal involvement began at a very young age –           Aline Elias, 17, Winkler, MB             Dana Jensen, 17, Claresholm, AB                www.cysticfibrosis.ca/
thoughtful nature attracted people to him. He must have         about five years old – with speaking engagements to Kin       Julie Gagnon, 30, Dorion, QC             Esther Leblond, 33, Montréal, QC                  news.asp?id=454


                                                         PAGE 18                                                                                                                     PAGE 19
                                              Nurses’ Corner                                                                                                             Nurses’ Corner
                Messages from Former Professional Advisors of the Adult CF Committee
                                                                                                                                           An Experience to be Remembered
                                                      Bravo!                                                                                            By Anna Tsang, Professional Advisor, 1999-2004
                         By Marguerite Plante, Professional Advisor, 1989-1994                                            I have been the Nurse Coordinator for the Adult CF
                         Celebrating 20 years!                ing needs: the need for young people to no longer be        Clinic at St. Michael’s Hospital in Toronto, Ontario for
                                                              treated by paediatricians and to be recognized as indi-     over 14 years. I have the good fortune of being a member
                         Thankfully, somebody’s keeping       viduals able to contribute to society, and especially the   of a CF team filled with many health care experts who
                         track.                               need to create a place for young people to go even fur-     are dedicated to looking after adults with cystic fibrosis.
                                                              ther. There was a need to start talking about sexuality,    To me, the greatest pleasure is having the opportunity to
                          At the time, not only was I a       contraception and pregnancy, and to find a way to           meet with the most wonderful group of people on a daily
                          nurse at the Sherbrooke cystic      avoid being penalized financially for being hospitalized.   basis. Of course, the people whom I am referring to are
                          fibrosis clinic, I was also the     Following considerable debate and as a result of strong     the people with CF. For years, I’ve been convinced that
                          mother of two children with         advocacy, these battles have been won and laid to rest.     having the CF genetic defect provides a gene that gives
                          cystic fibrosis. At the clinic, I   Congratulations!                                            people great characters and personalities. Perhaps that
                          witnessed the needs of future                                                                   is the only way that I can explain why the majority of the
   Marguerite Plante
                          adults. The disease had become      I’m proud to have contributed in my own way to this na-     adults with CF are the greatest people I have ever met.
less debilitating as a result of new treatments, making it    tional Committee. Congratulations once again because it     This theory of mine was confirmed when I served as the
                                                                                                                                                                                          Anna Tsang with part of the ACFC in 2000: Dale Walsh,
possible for patients to reach adulthood in good health.      still exists today and supports good people who want to     Professional Advisor for the Adult CF Committee from             Jacquie Romano, Bob Phillips, Dr. Chris Mody, Anna,
Something had to be done to satisfy a variety of press-       help make a difference.                                     1999 to 2004.                                                            Debra Mattson, and Murielle Gagné.

                  Happy 20th Anniversary Adult CF Committee                                                               It was a great privilege to serve the Adult CF Committee
                                                                                                                          where I met a group of adults representing their own re-
                                                                                                                                                                                         about their illness and its progression. The brochure of-
                                                                                                                                                                                         fers age-appropriate suggestions about what to say and
                            By Shirley Patola, Professional Advisor, 1994-1997                                            gions (i.e. Western, Ontario, Québec and Atlantic              do with their children, including dealing with the in-
                                                                                                                          Canada). Their purpose is to identify common issues and        evitable “crisis” that accompanies CF such as hospital-
Congratulations to the Adult CF Committee on reaching         planned to coincide with                                    raise awareness of these issues that could potentially af-     ization, home care and terminal illness. The project was
your 20th anniversary milestone. I know how pleased           the Canadian Cystic Fibro-                                  fect their health, health care and quality of life. Once the   inspired by our Committee chair, Bob Philips, who him-
Bryan Iverson, Roger Barnard, Sue McKellar, Frank             sis Foundation’s Annual                                     issues are identified, this group of dedicated adults with     self was a parent with CF and struggling with how to ex-
Smyth and Janice (Hart) Boston would be to know that          Meeting and Conference.                                     CF will collaborate with the Canadian Cystic Fibrosis          plain his illness and its progression to his son. Bob was a
their vision for an advocacy committee to serve the           They encouraged their                                       Foundation to develop potential courses of action to ad-       great leader who was extremely passionate about mak-
needs of adults with CF is as important now as it was in      friends to participate in re-                               dress the issues and make changes if possible.                 ing life easier for other parents with CF. Sadly, Bob
1988. My association with the Adult CF Committee in           search projects that would                                                                                                 passed away before the brochure was finished but his de-
the mid-nineties was as the Professional Advisor. As the      benefit all.                                                During my years of working with the Adult CF Commit-           termination and passion live on. I now have the privilege
CF Clinic Coordinator in Saskatoon, Saskatchewan, my                                                                      tee, I witnessed determination and selfless efforts put        of handing out this brochure to adults with CF in our
interest in the Committee came about when I saw that          What impressed me                                           forth by Committee members. I can still recall their           clinic, and I can still sense Bob’s passion every time I
our adult clinic was indeed growing and these young           the most…                                                   voices and facial expressions. I especially recall two spe-    hold one of those brochures in my hand.
folks had ideas and issues that should be shared. Little      The people who served on                                    cial projects that led to positive changes in adult CF care.
did I know that as the Professional Advisor I would be-       the Committee! They were            Shirley Patola          The first project was establishing an adult CF clinic in St.   The experience I gained from participating with the
come the student among a wise, energetic and enthusi-         passionate about their roles                                John’s, Newfoundland. Dale Walsh, the Atlantic Re-             Adult CF Committee was invaluable. In addition to gain-
astic group whose commitment was to make the world a          and what they could contribute to the Foundation. In the    gional Representative at the time, informed us that with       ing a much greater understanding of CF care across
better place for people whose lives had been touched          beginning, the group was small but their voices were        the growing number of adults with CF living in the area,       Canada, I learned to appreciate the power of the human
with cystic fibrosis. I sincerely enjoyed the journey.        mighty. Issues of concern once raised, were well re-        it was necessary to establish an adult clinic in order for     spirit and that all of us possess the potential to make
                                                              searched and the Committee members were not deterred        them to receive age-appropriate care. With the support         changes about things that concern us.
What I remember…                                              by a challenge. Social times were valued and there was      of the Adult CF Committee, Dale worked tirelessly with
There was no issue that was too great to tackle and then      always time for fun. They were supportive and caring of     his local officials and the CCFF for several years to help     So, to the Committee members, please accept my thanks
report to the Foundation. They brought forward issues         each other especially during a time of serious illness or   meet the health care needs of adults with CF living in         and admiration for your ongoing efforts in making a bet-
concerning medication costs, nutritional supplements          loss of a friend. Many of these young men and women         Newfoundland and Labrador. Today, there is a well-es-          ter world for adults with CF. To the health professionals,
and their availability, as well as oxygen and equipment       would go on to become people of influence in their local    tablished adult CF clinic in St. John’s. Dale Walsh and        you may want to think about serving this Committee
costs. Employment issues and disability tax credits were      chapters and in the Canadian Cystic Fibrosis Founda-        the Adult CF Committee are to be commended and they            sometime in the future. Finally, to the adults living with
explored. They gathered information and prepared a re-        tion.                                                       deserve the greatest recognition for this accomplish-          CF, if you have not had an opportunity to join the Com-
source guide for services and programs for cystic fibrosis                                                                ment.                                                          mittee yet, look out for openings. I guarantee that the ex-
care in all the Canadian provinces. There was a very in-      It was such an honor to be a part of the Adult CF Com-                                                                     perience is well worth the effort.
formative newsletter, Circle of Friends, published twice      mittee; it rates right up there with some of my best life   Another heart warming project was the creation of a
yearly. An educational Day for Adults with CF was             experiences. Keep the candles burning!                      brochure to help parents with CF talk to their children        Happy 20th anniversary!!!

                                                       PAGE 20                                                                                                                    PAGE 21
                                         Nurses’ Corner                                                                                                 Elbows, Sweat and Heart
                                     You are an Inspiration                                                                                               By Dr. André Cantin, M/SAC Liaison, 2004-2008
                             By Sharon Wiltse, Professional Advisor, 2004-2008
                                                                                                                           When I joined the Adult Cystic Fibrosis Committee four         CF sweat. ACFC members provide all of us with tremen-
For the past four years, I have had the privilege of being    communicating with the entire Canadian CF commu-             years ago, I did not realize that I was about to learn a lot   dous inspiration to find an effective cure or control for
the Professional Advisor to the Adult CF Committee.           nity. In the last couple of years, technology has enabled    about elbows, sweat and heart.                                 CF. Today, scientists in the BREATHE programs are ca-
When I was asked to consider taking the position, I re-       many Canadian adults with CF to participate in the An-                                                                      pable of correcting the chloride defect in delta F508
call pondering what I would have to offer. I am the CF        nual Day for Adults, held at the Annual Meeting and                                      Elbows – This group                cells. Today, more than ever, scientists and clinicians
nurse of one of the smallest adult clinics in Canada. I       Conference of the CCFF. Many months of planning by                                       (ACFC) knows how to roll           need to work together with individuals with CF. New
was to follow in the footsteps of my respected colleague      the ACFC members ensures a high quality, educational                                     up its sleeves and get             discoveries finally have a chance to correct the basic de-
and friend, Anna Tsang, the Nurse Practitioner at             day that is very informative for all those attending.                                    things done. With elbows           fect, not only in sweat but in all affected tissues. Such
Canada’s largest adult CF clinic. On reflection, I realized                                                                                            bare, they tackle the tough-       advances in research and CF care need strong support,
                                                                                                                                                       est problems and rise to           and clearly the ACFC is saying, “We can do it – no
that we both are only a part of a much larger CF commu-         You live the life – only you can tell the real
nity in Canada and that each one of us has a unique per-                                                                                               every challenge. Elbows            sweat.”
                                                               story. You are the true experts on living with                                          symbolize the group’s ex-
spective and role in supporting the visions and goals of
                                                               cystic fibrosis. You are an inspiration to all of                                       ceptional work ethic, and            All individuals I have interacted with on the
the CCFF. I accepted the position.
                                                                      us to continue with the CF cause.                                                much more. Elbows sym-              ACFC have shown a degree of care, dedication
                                                                                                                                                       bolize creative problem
The Committee members I have met, and the passion that                                                                                                                                           and spirit that is truly exceptional.
they all bring to the meetings, continue to inspire me. The   As a member of the Canadian CF Nurses Interest Group                                     solving with respect to the
meetings never seem long enough; so many ideas and ex-        (CCFNIG), I am able to share information about the                                       risk of bacterial transmis-
periences to share, so many projects to consider.             Committee’s work with my nursing colleagues when we          sion, and they symbolize genuine friendship.
                                                              meet at least twice each year.                                                                                              Heart – The most important lesson of all. The members
One thing that stands out for me is the commitment to                                                                      The risk of cross-contamination with cepacia and other         of the ACFC realize that it is unacceptable that individu-
represent all Canadians living with cystic fibrosis, their    As a nurse for more than 35 years, having worked in          superbugs is a reality that can impose isolation and fear      als with CF do not all have access to affordable essential
families and significant others. Committee members,           many different health care environments, I can sincerely     in any person with CF. This issue threatened the very          medications. Because of their genuine concern for all in-
past and present, are often out in the public creating        say that the highlight of my career has been the opportu-    survival of the ACFC. So what did the ACFC do; fold            dividuals with CF, ACFC members took on the monu-
awareness of CF or advocating for equity or improve-          nity to work with adults with cystic fibrosis, their fami-   shop and go home to avoid all risks? Keep up business as       mental task of surveying drug access across Canada and
ments in CF care. The publication of this adult newslet-      lies and the CF community. To the members of the             usual while putting the health of all their members at         reporting this information back to the medical commu-
ter, Circle of Friends, serves as a valuable resource in      ACFC, I want to say that I appreciate that cystic fibrosis   risk? Or find creative solutions to deal with the problem?     nity. The motivation behind this effort came from indi-
                                                                                        is the common denominator          Of course the ACFC chose the latter. Best hygiene prac-        viduals of the ACFC who all have one thing in common –
                                                                                        that brings us together, yet I     tices were put into place for committee members at             heart.
                                                                                        have a great appreciation for      meetings, and the ACFC immediately saw that new web-
                                                                                        the opportunities I have to get    based technologies offered creative solutions. The last        It has truly been an honour to rub elbows with the
                                                                                        to know each of you as a person.   ACFC general assembly was an amazing event with                ACFC. All individuals I have interacted with on the
                                                                                                                           smooth interactions between on-site participants and in-       ACFC have shown a degree of care, dedication and spirit
                                                                                       Congratulations to all the past     dividuals from across Canada.                                  that is truly exceptional. I look forward to continuing to
                                                                                       and present members of the                                                                         rub elbows with all adults with CF as we roll up our
                                                                                       Adult CF Committee for 20           So what do elbows have to do with prevention of infec-         sleeves in the quest to find a cure or an effective control
                                                                                       years of success. You have ful-     tions? Obviously handshaking puts persons with CF at           for cystic fibrosis.
                                                                                       filled your role in supporting      increased risk of cross-infection, so the ACFC devised
                                                                                       the CF community by sharing         the elbow salute. Touching elbows, a low risk activity,
                                                                                       your experiences, identifying       has become a greeting that not only acknowledges the
                                                                                                                                                                                             As of February 2008,
                                                                                       common issues, raising aware-       other person’s presence but also reflects the genuine
                                                                                                                                                                                             Dr. Yves Berthiaume
                                                                                       ness, and advocating for a qual-    friendship and concern adults with CF have for one an-              will be the M/SAC
                                                                                       ity of life deserved by all         other.                                                            Liaison for the ACFC.
                                                                                       Canadians living with cystic fi-                                                                            Welcome,
                                                                                       brosis. You live the life – only    Sweat – The CF paradox. Amazingly, ACFC members                      Dr. Berthiaume!
                                                                                       you can tell the real story. You    seem to tackle the most difficult problems with high                   Thank you,
                                                                                       are the true experts on living      spirits and without ever breaking a sweat. This is para-                Dr. Cantin,
                                                                                       with cystic fibrosis. You are an    doxical since the CF diagnosis is based on measurements           for your many years
                                                                                       inspiration to all of us to con-    of chloride in sweat! However the real curiosity I have              with the ACFC.
               Sharon Wiltse with the Adult CF Committee, 2004:                                                            developed about sweat is related to the importance of
                                                                                       tinue with the CF cause.
         Sharon, Ann Julie Desmeules, Cheryl Corcoran, James Tapankov,                                                     solving the basic defect that leads to high salt content of
               Karen Gliddon, Nancy Kernaghan, and Carole Varin.                                                                                                                                                               Dr. André Cantin

                                                        PAGE 22                                                                                                                     PAGE 23
                                Celebrate with a Chuckle                                                                                       CCFF News                                   Contact your Adult CF Committee
                              By Kalyn Steel, Western Regional Representative                                                      The CCFF is happy to welcome Katie Murray to the                   Karen Gliddon, Chair
                                                                                                                              position of Coordinator, Community Relations & Re-                        kgcf@sympatico.ca
If the old adage “laughter is the best medicine” is true,                                                                     sources. Katie is a recent graduate of Brock University              519-753-9584 (Brantford, ON)
then how come CF meetings aren’t more like hyena                                                                              where she played a key role in reviving Brock’s participa-
fests?                                                                                                                        tion in Shinerama and was Brock’s Shinerama Director                        Kalyn Steel
                                                                                                                              for two years. Katie’s primary role will be to work with           Western Regional Representative
While it has yet to be proven to lengthen one’s life, or                                                                      Kelly Gorman, Manager, Community and Government                      jesusjunkie17@hotmail.com
cure anything, research has shown several physical ben-                                                                       Relations, in supporting the activities of the Adult CF            403-894-9055 (Lethbridge, AB)
efits of “busting a gut” on a regular basis. Physically our                                                                   Committee, and to provide current information on serv-
bodies react to funny things; the muscles in our face and                                                                                                                                             Melissa McGoldrick
                                                                                                                              ices and resources available to assist individuals with CF
body get stretched, our blood pressure and pulse rises,                                                                                                                                        Western Vice-Regional Representative
                                                                                                                              and their families. Katie started her role on January 14,          melissamcgoldrick@hotmail.com
and as we breathe faster, we allow more oxygen to our                                                                         2008 and can be reached at kmurray@cysticfibrosis.ca                 403-695-7129 (Calgary, AB)
tissues. I’m sure that all CF doctors would agree that                                                                        or 1-800-378-2233 (CCFF) ext. 291.
breathing faster and getting more oxygen certainly bodes                                                                                                                                                  Kelly Sheppard
well for their patients. A study also found that 10-15                                                                            Thanks to thousands of Canadians with CF taking                 Atlantic Regional Representative
minutes of laughter can burn about 50 calories.                                                                               part in a large-scale genetic study, a group of scientists           kellyasheppard@hotmail.com
                                                                                                                              from across Canada has pinpointed key factors influenc-              709-596-1012 (Carbonear, NL)
In addition, some studies have shown a chuckle or two                                                                         ing the severity of CF lung disease. Data from a subgroup
can raise the level of infection-fighting antibodies in the                                                                   of this larger population, are helping to explain why peo-                  Cheryl Corcoran
body. When we’re stressed out, our immune system                                                                              ple who are known to have inherited the same mutation             Atlantic Vice-Regional Representative
tends to slow down its production, but when we’re                                                                             of gene responsible for CF, experience significant differ-               kccorcoran@eastlink.ca
happy, it tends to work overtime.                                                                                             ences in lung disease severity. The full press release is            902-527-0142 (Bridgewater, NS)
                                                                                                    é
                                                                           Kalyn Steel and her fiancé Tyler
                                                                                                                              available at www.cysticfibrosis.ca/news.asp?id=463.
                                                              the glass half full tend to make strong personal connec-                                                                                     Nathan Fish
        Provine notes that regardless of                                                                                                                                                          Ontario Regional Representative
                                                              tions with the people around them. This in turn, may                 Coming to you LIVE from BANFF – The 11th Annual
       whether laughter actually improves                     have its own health benefits.                                                                                                         nathan_fish@hotmail.com
                                                                                                                              Day for Adults with CF and the Medical/Scientific
       your health or boosts your energy,                                                                                     Panel. This special and informative day will be broadcast            519-858-3208 (London, ON)
          it undeniably improves your                         Provine notes that regardless of whether laughter actu-         live over the internet on SATURDAY, APRIL 26th, be-
                 quality of life.                             ally improves your health or boosts your energy, it unde-       ginning at 9:00am MDT (11:00 am EDT). Join our panel
                                                                                                                                                                                                       Jeremy Tompkins
                                                              niably improves your quality of life.                                                                                            Ontario Vice-Regional Representative
                                                                                                                              of special guests to discuss intimacy and family plan-
                                                                                                                                                                                                   tompkins.jeremy@gmail.com
                                                                                                                              ning, drug and clinic updates, and financial concerns                 416-303-1778 (Toronto, ON)
Laughter is also notorious for dulling pain. Robert R.        So, while this may not be a news bulletin of the highest        and advice for adults with CF. In the afternoon, join the
Provine, professor of psychology and neuroscience at the      importance, its importance comes in the realization that        Medical/Scientific Conference Program for an update on                      Julie Gagnon
University of Maryland, Baltimore County and author of        we can make ourselves FEEL BETTER, just by laughing.            current issues in CF research and care. For more infor-             Quebec Regional Representative
Laughter: A Scientific Investigation was quoted in 2006       Cystic fibrosis is so ingrained in our everyday lives that it   mation and to tune in, visit www.cysticfibrosis.ca.                    gagnonjul@hotmail.com
as saying that numerous studies of people in pain or dis-     can be hard to find things outright hilarious. We all know                                                                            450-455-9757 (Dorion, QC)
comfort have found that when they laugh they report           how this feels. However, that isn’t a dilemma specific to
that their pain doesn’t bother them as much.                  people with CF and their families. It seems everyone is                                                                                    Patrick Brother
                                                              trying to find the greener grass, and some hope in today’s                                                                        Quebec Vice-Regional Representative
Laughter is still regarded by most medical professionals      crazy society. If people with CF can make light of every-                                                                               brotherp@videotron.ca
as strictly a social reaction, but some wholeheartedly        day things, it is sure to inspire someone else to do so as                                                                            450-669-6304 (Laval, QC)
agree a health bonus may come from spending time with         well. So, while this is not an official prescription, I would
family and friends who make YOU laugh; and the rela-          encourage you all to laugh your way to a healthy spring.                                                                                    Carole Varin
tionships laughter can infuse. No matter what the actual                                                                                                                                              Editor, Circle of Friends
       cause and effect, everyone agrees that laughter is     As we celebrate the 20th anniversary of the Adult CF                                                                                      cvarin@rogers.com
                   certainly not hurting the body or mind     Committee, I’m so happy, I can hardly contain a smile                                                                                 519-858-8544 (London, ON)
                     in any way.                              and that’s almost a laugh. Its funny how things always
                                                              come full circle and we can learn from those who went                                                                           Dr. Yves Berthiaume, M/SAC Advisor
                      Provine has found that most people      before us. Sharing funny stories from the years gone by                                                                             yves.berthiaume@umontreal.ca
                       are 30 times more likely to giggle     could help you more than you think.                                                                                                  514-890-8000 (Montréal, QC)
                       when in the presence of other
                                                                                                                               Congratulations to long-time CCFF volunteer Silvanna            Sharon Wiltse, Professional Advisor
                       people than when they’re alone.        For more information: http://www.cbsnews.com/sto-
                                                                                                                                 D’Onofrio (pictured here with her fiancé Kevin),                       swiltse@shaw.ca
                       People who are “bubbly” and see        ries/2006/04/07/health/webmd/main1481492.shtml.
                                                                                                                                   who recently celebrated her 50th birthday!                      250-370-8084 (Victoria, BC)


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