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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 firstname.lastname@example.org 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 email@example.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: firstname.lastname@example.org 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- email@example.com 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 firstname.lastname@example.org 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, email@example.com and as we breathe faster, we allow more oxygen to our 2008 and can be reached at firstname.lastname@example.org 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 email@example.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- firstname.lastname@example.org 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. email@example.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- firstname.lastname@example.org 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. email@example.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- firstname.lastname@example.org 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 email@example.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 firstname.lastname@example.org 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), email@example.com 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) PAGE 24 PAGE 25 Charitable registration: 10684 5100 RR0001 Breathing life into the future TM www.cysticfibrosis.ca 2008-04|Cette publication est aussi disponible en français.
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