Horizon - Huntington

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					                                                                                                                          No. 132          Fall 2010




The $592,006 dollar investment:
HSC’s latest research funding
By Julie Stauffer                                      Allele-specific replacement of huntingtin         Cardiolipin genes as biomarkers of
As June heat waves hit southern Ontario,               exon 1                                            Huntington disease
HSC’s Research Council, together with newly            The University of Missouri’s Dr. Christian        Dr. Grant Hatch, a professor of pharmacology
appointed Executive Director and CEO Bev               Lorson received $105,084 to follow up on          and therapeutics at the University of
Heim-Myers, gathered around the table to               some very promising early studies that used       Manitoba, received $75,000 to explore
select the most promising of the research              gene therapy to reduce the amount of mutant       the possibility of using cardiolipin gene
proposals that have flooded into National              huntingtin in cell cultures. Using a virus, Dr.   activity to measure the early stages of
Office.                                                Lorson will deliver an enzyme into brain          HD. Cardiolipid is a key molecule found
                                                       cells to actually repair a specific portion of    in the membranes of mitochondria — cell
With 20 applications to vet, the task wasn’t           the huntingtin RNA within living cells. The       powerhouses that are seriously impaired
easy. “I was very impressed with the quality           advantage of this technology is that it will      in Huntington disease. Dr. Hatch has
of the proposals we received, and it’s                 result in only the reduction of the mutant        already uncovered dramatic changes in the
tremendously encouraging to see so much                huntingtin protein, and not the normal            expression of the cardiolipid gene in the
interest in HD research,” Heim-Myers notes.            protein, which has important functions in         hearts of HD mice. Thanks to HSC funding,
For 2009/10 HSC invested more than half                neuronal health. This is the first time this      he’ll now expand his research to see if the
a million new dollars through our New                  technology has been applied to Huntington’s,      same thing is true in brain and muscle tissue,
Pathways and Navigator research programs               although it has shown promise in other            potentially leading to an important tool to
in Canada and around the world – research              diseases.                                         test the effectiveness of treatments in pre-
that Heim-Myers believes will yield new                                                                  symptomatic HD.
insights into HD and new therapeutic                   The Transporteome, an unbiased
approaches.                                            approach to identify early defects in             Therapeutic use of ganglioside GM1 in
                                                       transported proteins and signals in               Huntington’s disease
“Although some of these projects involve               Huntington’s disease                              In the past, HSC has funded Dr. Simonetta
 basic science and some are more applied,                                                                Sipione’s research into ganglioside GM1,
                                                       Dr. Frédéric Sadou, head of signaling
 I’m confident they all will pay off for                                                                 a type of lipid naturally found in cells.
                                                       neurobiology and cancer at France’s Institut
 Huntington’s families,” she says.                                                                       Ganglioside levels drop in HD, contributing
                                                       Curie, received $141,200 to examine the
                                                       communication systems within HD brain             to the death of brain cells. Her early studies
New Pathways                                           cells. Every cell contains a group of proteins    found that boosting ganglioside levels in
Launched in 2007/08, this program                      collectively called the “transporteome” that      test-tube experiments protects HD cells.
supports innovative research in Canada and             carry signals from one part of the cell to        This year, we awarded Dr. Sipione from the
internationally into the early mechanisms              another, including signals involved in cell       University of Alberta pharmacology $68,525
of HD, the biomedical functions of the                 survival and cell death. In this one-year         to see if she can obtain similar results in
huntingtin protein, the impact of CAG                  study, Dr. Sadou will look for differences        live animals, paving the way to a possible
repeats and the role of modifier genes in HD.          between the transporteome in normal mice          treatment for HD. Over the coming year, Dr.
                                                       and HD mice, potentially revealing new            Sipione will treat HD mice with this lipid and
                                                       pathways or processes that are affected           measure the impact on motor symptoms and
                  INSIDE                               early in the course of the disease.               brain biochemistry.
                                                                                                         Defining toxic and protective
   HSC Welcomes New CEO................... 3           NAVIGATOR                                         conformations of the amino-terminus
   Celebrating Our Heroes ..................... 6      The NAVIGATOR program is designed                 of mutant huntingtin protein at the
                                                       to fund scientific research of direct and         nanometer scale by use of FLIM-FRET
   Great Canadian Series –                             immediate relevance to HD and to encourage        and HRM in live cells
   The Honourable James Jerome ........... 9           outstanding investigators in Canada to            We already know that some forms of the
                                                       pursue Huntington disease.                        protein produced by the HD gene are toxic,
   2010 Conference .............................. 10
                                                                                                                                    continued on page 2
                                                   HSC’s latest research funding
                                                   continued from page 1

                                                   while other forms actually protect brain cells. Dr. Ray Truant, chair of HSC’s research council,
                                                   received $74,694 over two years to identify exactly which conformations have which effects.
                 ISSN 0827-7605                    The McMaster researcher will also look at whether the toxic conformation of huntingtin is
      Horizon is the newsletter of the             caused by other proteins binding to it. Since mis-folding of mutant huntingtin is a key event
      Huntington Society of Canada.                that leads to other cell signalling problems, this is important research that could lead to new
      Published three times per year               therapeutic approaches to HD.
      (Spring, Fall and Winter), its purpose
                                                   Stay tuned for our Symptomatic Relief funding announcements! In partnership with the
      is to convey information to individuals
                                                   the Huntington Study Group, the goal of this program is to test experimental interventions
      with Huntington disease and their
                                                   that show promise of providing demonstrable symptomatic benefit.
      families, health care professionals,
      friends and supporters.
      Huntington disease is a hereditary
      brain disorder which has devastating            National Office Volunteer Program
      effects on both body and mind.                  Here in Kitchener, we’re looking forward to seeing some new faces around the office,
      The symptoms, which may include
                                                      thanks to the work of Krista Lavender. Krista, who joined HSC’s Development and
      uncontrollable jerking movements
                                                      Marketing Team in December 2009, has been working to expand our local Volunteer
      and relentless cognitive and emotional
                                                      Program and bring more people on board to complement the dedicated team who
      impairment, usually appear between
                                                      currently donate their time to HSC’s National Office.
      the ages of 30 and 45, and gradually
      worsen over the 10-25 year course of            Our objective is to become a charity of choice for skilled individuals in Waterloo Region
      the disease. As yet, there is no cure.          and Southern Ontario who want to give back to their community. As the project leader,
      The Huntington Society of Canada                Krista will implement the plan and will seek input from our staff, our vastly experienced
      is a national non-profit charitable             Chapter Volunteers and our local community.
      organization founded in 1973 to help            We anticipate that a well-executed volunteer strategy will result in huge dividends,
      individuals with Huntington disease             bringing high-calibre support and expertise into HSC and building on the excellence of
      and their families.
                                                      this organization.
           Editor: Kelly Macnab
       Associate Editor: Edward Bird
      Layout: Real World Graphic Design
      Horizon welcomes your comments,
      ideas and suggestions for future
                                                      Add Your Voice! Membership
      articles. Please contact:
         Huntington Society of Canada
                                                      Drive In Action!
          151 Frederick St., Suite 400                Stand up and be counted as a member of Canada’s Huntington’s community. Our
            Kitchener, ON N2H 2M2                     members are partners in caring — there is strength in our numbers. Our members
               Tel: (519) 749-7063                    receive tremendous benefits for their support, but more importantly, our members
               Fax: (519) 749-8965                    represent a promise to the HD community: you are not alone.
       Email: info@huntingtonsociety.ca               Join as a member today and receive your invitation to an exclusive reception on
      Web site: www.huntingtonsociety.ca              Parliament Hill — and other exclusive benefits!
           Charitable Registration #:                 Visit www.huntingtonsociety.ca/membership, call at 1-800-998-7398 or use the coupon
              11896 5516 RR0001                       on the last page of this issue of Horizon to mail in your membership today!




    The Huntington Society of Canada’s NAVIGATOR research
    program is supported by the following funds:
    Benefactor:
    Sun Life Financial                    Leadership Partners: AGF Group of Funds; George Weston Ltd.;
                                          The Joseph S. Stauffer Company; TELUS Community Connections
                                          Family Fund Partners: Barrett Research Fund; Bloom Family Fund;
                                          The Kelly Bumstead Family Fund; Chaplin Family Fund; Cranston-Dorr
                                          Family Fund; Annie J. Cutler Memorial Fund; Janice Johnson Family Fund;
                                          Sylvia Hickson Family Fund; Irwin Family Fund; Kidd Family Fund; McArthur Family Fund in
                                          memory of Megan McArthur; Skene/Stevens Family Fund; Skeoch Family Fund; Sterling Family
                                          Fund; Wiswell Family Fund; Wright Family Fund in memory of Helen-Mary Wright


2
   Introducing the Society’s New CEO and Executive Director
HSC’s new leader radiates enthusiasm and         “So I learned both sides of a not for profit      Heart and Stroke Foundation. Moving to
energy as she reflects on her first 30 days at    organization, it’s mission, and fundraising”     research accountability in the non-profit
the helm of the Huntington Society.               she explains.                                    sector involved a steep learning curve. She
                                                                                                   thrived on the challenge.
Bev Heim-Myers was captivated by the             Her academic background includes a degree
position given the Society’s reputation for      in business, with post-graduate studies in        Now she’s applying her experience and
effectiveness in serving families, driving       gerontology, the latter prompted by seeing        can-do attitude to the Huntington Society
world-class research and advocating against      her father debilitated by the effects of a        of Canada. During the first months she’s
genetic discrimination. Everything she           stroke. “There were a number of years             been busy facilitating the funding proposals
has observed so far has confirmed that           where I knew the person behind the stroke         for HSC’s latest round of research grants,
impression.                                      but others didn’t, and that never sat well with   connecting with our global partners and
                                                 me,” she recalls. “I just thought there was a     heading to Parliament Hill for a very
“It’s an incredibly dedicated team,” she says.
                                                 better way to deal with people and a better       encouraging meeting with the Prime
“I feel very honoured that I’ve been the one
                                                 way to respect who they really are.”              Minister’s Office, to discuss the elimination
 chosen to lead this organization.”
                                                                                                   of genetic discrimination
                                                 Her early career, however, lay in the
Bev comes from the Heart and Stroke
                                                 corporate sector. Bev held national               “It speaks to the credibility of this
Foundation of Ontario where she spent the
                                                 positions at TD Bank Financial Group in            organization that we have an opportunity to
last eight years, first as Senior Manager of
                                                 communications, sales and human resources          take a leadership role in moving the genetic
Research and then working in the field as
                                                 before she made the targeted leap to the           non-discrimination agenda forward,” she
Regional Manager, Ontario Central West,
                                                                                                    says, praising the success of HSC’s Director
                                                                                                    of Individual and Family Services, Jo Anne
                                                                                                    Watton, for the fight for genetic fairness.
                                                                                                   Back in southern Ontario, she also had a
                                                                                                   chance to spend an afternoon with HSC
                                                                                                   co-founder Ariel Walker. “What a great
                                                                                                   opportunity that was,” says Bev. “You can
                                                                                                   learn history so much better by talking to the
                                                                                                   person who helped to create it.”
                                                                                                   Now that she’s had a chance to get
                                                                                                   acquainted with the organization, Bev is
                                                                                                   looking forward to hitting the road to meet
                                                                                                   families, volunteers, donors, staff and
                                                                                                   researchers across the country.
                                                                                                   While she’s cautious about setting goals so
                                                                                                   soon after joining the Society, she sees an
                                                                                                   opportunity to tell the Huntington’s story
                                                                                                   more widely, bringing in more support and
                                                                                                   creating awareness from outside the HD
                                                                                                   community. And, of course, she’s committed
                                                                                                   to investing in research that will lead to
                                                                                                   treatments — and ensuring the Society has
                                                                                                   the funds to do that, while continuing to
                                                                                                   provide excellent support to individuals and
                                                                                                   families living with HD
                                                                                                   Speaking more personally, Bev notes that
                                                                                                   her appointment to HSC has been just one
                                                                                                   landmark in a year of head-spinning events,
                                                                                                   including her 35th wedding anniversary
                                                                                                   (celebrated with a trip to Italy), the birth of
                                                                                                   her son’s first child and her first grandchild
                                                                                                   and the up-coming marriage of her daughter
                                                                                                   this fall.
                                                                                                   “Sometimes the universe just comes together
                                                                                                    and this is the time for the Society to grow
                                                                                                    beyond where we have come from in order
                                                                                                    to evolve to where we are going. Together we
                                                                                                    will all make that happen.” says Bev.

                                                                                                                                                 3
 Ontario Shores:
 Bringing Care to the Community
If you’re looking for Carol Harren, chances        Part of the solution also lies in educating      therapists, social workers, recreational
are good you’ll find the RN somewhere on           caregivers about the frustrating behavioural     therapists, and community nurse clinicians,
the highways or back roads of central-east         symptoms that can accompany HD: things           supported by the management team at
Ontario.                                           like apathy, impulsivity and perseveration.      Ontario Shores, all working together to
                                                  “They don’t always realize that it’s part of      ensure each client gets the appropriate care.
The community nurse clinician from the
                                                   the illness, it’s the brain deterioration, not
Ontario Shores Centre for Mental Health                                                              For clients with particularly complex needs,
                                                   just someone being difficult,” she explains.
Services supports her clients wherever                                                               the hospital offers short-term admissions for
they happen to be, whether it’s hospitals,        She also cautions them about                       medications review and stabilization, or to
long-term care facilities or their own homes,     misinterpreting certain behaviours. For            provide cognitive behavioural therapy —
covering a territory of more than 16,000          example, while inappropriate sexual               “work that’s too intense to be done at home or
square kilometres.                                behaviour can sometimes be a symptom of            in the community,” Carol explains.
                                                  HD, a client with Huntington’s may simply
Despite all the time spent behind the wheel,                                                        And for clients outside their normal service
                                                  be removing clothing because the altered
Carol loves her job. And in particular, she                                                         area, the Ontario Shores team has even
                                                  body metabolism that is a feature of HD is
enjoys the challenge of working with her                                                            provided videoconferencing consultations via
                                                  making the individual uncomfortably warm.
clients with Huntington disease (HD).                                                               Ontario’s Telemedicine Network.
                                                  In other cases, involuntary movements can
“You have to be so creative,” she says. Every     sometimes be mistaken for aggression.              As more people find out about their program,
 person with HD is different; even within the                                                        the hospital has begun fielding more and
                                                  Above all, Carol emphasizes the need to see
 same family, the symptoms aren’t the same,                                                          more referrals from GPs, neurologists,
                                                  the individual behind the collection of HD
 so Carol has to come up with strategies                                                             hospitals, and long-term care facilities. “I
                                                  symptoms. “We’re looking at the client as
 tailored to the individual needs and strengths                                                      think it’s a much-needed resource that the
                                                  a whole and not just looking at the illness
 of each client. “There’s no cookie-cutter                                                           community has embraced,” says Carol.
                                                  but seeing the person they were before they
 approach,” she says.                                                                               “Ontario Shores is committed to this client
                                                  became ill,” she says.
                                                                                                     population and their families.”
                                                  Today she gets emails from around the
                                                  world from people who want to learn more          Families don’t need a medical referral to
                                                  about Ontario Shores’ innovative approach         access Ontario Shores’ services: simply call
                                                  to treating HD.                                   the intake line toll-free at 1-877-767-9642 or
                                                                                                    download a referral form from the facility’s
                                                  One of its cornerstones is a interdisciplinary    website
                                                  approach that includes neuropsychologists,        (http://ontarioshores.ca/referral.htm).
                                                  neuropsychiatrists, nurses, behaviour




Every Amaryllis Inspires Hope!
Our 2010 Amaryllis Campaign is bursting into bloom, and there are          Visit www.inspirehope.ca to view our virtual Inspire Hope Amaryllis
more ways than ever for you to get involved.                               Garden — and read messages of hope left by others. Here, you can
You can:                                                                        find details about our live Amaryllis campaign too, including how
                                                                                    to order kits or cases and support the cause.
•	 Plant	a	flower	in	our	virtual	garden
                                                                                        Every Amaryllis inspires hope. Each and every plant
•	 Buy	your	own	Amaryllis	kit	                                                            blooming in someone’s home or office tells our story,
   (containing a bulb, pot, soil and care                                                   raises awareness and critical funds for the fight
   instructions) from a volunteer in                                                          against Huntington disease. Our goal this year is
   your community                                                                                             to sell 23,400 Amaryllis kits across
•	 Order	cases	of	12	Amaryllis	                                                                                 Canada, and you can track our
   to sell to your friends,                                                                                     progress at www.inspirehope.ca.
   neighbours and co-                                                                                         You can Inspire Hope today! Visit
   workers                                                                                                    www.inspirehope.ca, call us at
•	 Help	us	spread	the	word	                                                                                    1-800-998-7398 or email us at
   on Facebook by joining                                                                                      amaryllis@huntingtonsociety.ca!
   the Huntington Society of
   Canada group and following
   us on Twitter @HuntingtonSC.

 4
            An Ariel View                                                                 Unite the
                                                                                          Fight:
I don’t know about you, but I can hardly
believe that we are entering into fall.
                                             humble beginnings of the Huntington
                                             Society of Canada, where it all began.
                                                                                          YPAHD’s
Although spring seemed rather brief, I
managed to get my garden in, and then
                                             We both laughed and cried as I shared
                                             stories about the people Ralph and
                                                                                          Relay of
seemingly summer was upon us. One
of the things that Ralph and I always
                                             I met, the places we visited and our
                                             never-ending purpose and passion to          Hope
appreciated about living in Canada was       see the world free of HD. I shared about     From coast to coast, Young People
the ever-changing seasons: the way           that day when Ralph and I recognized         Affected by Huntington Disease
the cold, harsh winter gives way to the      that the season was changing and that        (YPAHD) have been busy “uniting
warmth and beauty of spring, followed        it was time for us to step aside and let     the fight,” organizing fundraising
by the hot, sunny days of summer, and        others take HSC to greater heights.          events across the country and
then the vibrant colours of the trees        Let me say that I came away feeling          adding a youth component to
in autumn and the crisp, white snows         so good about this new season that           several existing events.
again. I truly think that that was because   HSC is entering into under the capable       YPAHD President Brynne Stainsby
of the fact that we both enjoyed the         leadership of Bev Heim-Myers and her         describes the series of walks, runs
adventure that comes with change.            team across Canada. As I said to her         and other creative fundraisers as
I don’t think either of us could ever        that afternoon, I don’t think HSC has        a “relay of hope,” bringing together
survive in the midst of the same old         ever had a better staff than they do at      youth affected HD while also
routine, day in and day out, and keep our    this moment in time. I see that this is      reaching beyond the Huntington’s
sanity (although I am sure some people       going to be a great season of adventure      community to increase awareness,
at times questioned our sanity!). As         for HSC in the days, weeks, months and       raise money and tap into fresh ideas
the founders of the Huntington Society       years ahead.                                 and energy.
of Canada, we certainly saw seasonal         Finally, I look forward to seeing many       The initiative kicked off with
changes over these past 35-plus years,       of you at the upcoming National              a youth team in Halifax’s Blue
but that’s what comes with an ever-          Conference in Edmonton. Just writing         Nose Marathon in May. Further
growing, ever-expanding Society like         that brings back a flood of great            west, YPAHD members organized
ours. We quickly learned to embrace          memories, but I have to prep my garden       a scavenger hunt and a pub night
those changes and realized that they         for winter if I am going to make it to the   in Toronto, youth participation in
were seasons to be enjoyed, not life         conference. See you in November!             the Regina chapter’s walk and a
sentences to be endured.
                                                                                          singles auction in Alberta that saw
Well, this past June I felt like a fresh                                                  an audience members bidding
breeze of spring blew into my home                                                        on a succession of bachelors and
in Cambridge when the new CEO, Bev                                                        bachelorettes.
Heim-Myers, stopped by for a visit. She
                                                                                           Still to come are baseball and golf
came to hear the history and see the
                                                                                           tournaments, as well as the annual
                                                                                          “Hike 4 Huntington’s” in Vancouver
                                                                                           this September, which will include
                                                                                           youth-specific activities.
                                                                                           Brynne is enthusiastic about the
                                                                                           results to date. “They’ve been very
                                                                                           successful in terms of bringing
                                                                                           new people out, as well as from a
                                                                                           fundraising perspective,” she says.
                                                                                          “I think everyone’s been having a lot
                                                                                           of fun.”
                                                                                          The relay will wrap up at the
                                                                                          National Conference in Edmonton in
                                                                                          November, “bringing the torch back,”
                                                                                          says Brynne. But given the success
                                                                                          of this youth-led effort, YPAHD
                                                                                          could soon be organizing Unite the
                                                                        June   2010
                                            Bev chat in   Ariel’s home,                   Fight 2011.
                           Ariel (left) and


                                                                                                                                 5
       Celebrating Our Heroes – Family Profile:
                   The Kuzyk Family
    By Julie Stauffer
    For almost as long as the Huntington Society of Canada has been
    around, the Kuzyk family has been a part of it. Diane Kuzyk first
    contacted Ralph and Ariel Walker in 1974 after her mother was
    posthumously diagnosed with HD. The family knew something
    had been wrong with her, like her father before, but it wasn’t until
    the autopsy that they had a name to attach to her symptoms.
    Diane and her husband John were quickly persuaded to start an
    HSC chapter in Edmonton. An ad in the paper drew 29 people to
    the first meeting, everyone cramming shoulder to shoulder into
    the Kuzyks’ modest living room.
    In the early days, daughter Cheryl recalls, the chapter would
    do just about anything to raise funds: collecting newspapers for
    recycling, selling Christmas cards, organizing legendary garage
    sales. The more they did, the better they got, raising a total of           (l-r) Cheryl, Diana, Diane & John
    more than $1.5 million over the past three decades.
                                                                                When the media wanted a quote or geneticist Stephen Bamforth
    The biggest emphasis, however, was always on providing social               was looking someone to speak to his University of Alberta class
    support. As a teenager, before the Northern Alberta Resource                about HD, her mother was always ready to step in. Diane wrote
    Centre was established, Cheryl would see Huntington’s ads on the            newsletter articles about living at risk and, together with long-
    local buses that listed the Kuzyk family phone number as a source           time chapter members Marj McIntyre and Betty Voelker, drove
    of more information.                                                        across the northern half of the province to meet with families and
                                                                                healthcare professionals in scattered communities.
    Cheryl praises her mother’s honesty in speaking up about the
    disease. “Mom chose never to hide the fact that there was                   That hard work earned Diane and her family an award from
    Huntington’s in the family,” she says. “It’s a fact of life that we’re at   the Premier’s Council in Support of Alberta Families in 1992,
    risk for Huntington’s. This is who we are.”                                 recognizing their efforts to support the HD community in northern
                                                                                Alberta since the mid-1970s.
    Nor did the family let the threat of inheriting the gene put a stop
    to their outgoing, live-life-to-the-fullest philosophy, marked by           Meanwhile, John has always been there to quietly do what needed
    frequent family get-togethers, season tickets to the Edmonton               doing. “He’s the Duracell battery,” Cheryl says. Now in his 80s,
    Eskimos and celebrations of all kinds. When Diane was diagnosed             he’s still willing to drop his gardening and organize bingo rosters,
    in 1987 at the age of 53 she and John packed their bags and                 chauffeur volunteers and sell Amaryllis every fall.
    travelled the world as frequently as possible before her symptoms
                                                                                As Cheryl recounts the long list of chapter efforts over the years,
    became too severe.
                                                                                somehow the conversation always turns to how much fun the
    Four years ago, they were able to celebrate their 50th wedding              group had: the friendly competitions to see how many raffle
    anniversary with more than a hundred friends and relatives. And             tickets they could sell at the local Safeway, for example, or the
    although Diane subsequently moved into St. Joseph’s Auxiliary               dancing after the AGM at the annual chapter Christmas party.
    Hospital, that didn’t stop the Kuzyk family from marking her 75th
                                                                                Now everyone is focussed on hosting the National Conference this
    birthday last year in fine style.
                                                                                fall, which they hope will attract plenty of Huntington’s families
    When an outbreak at St. Joe’s scuttled the original plans for               from Wild Rose country.
    an open house there, the family simply shifted gears and
                                                                                “We are so excited,” says Cheryl, who heads up the local planning
    invited dozens of guests join them at St. Paul’s United Church
                                                                                 committee. “We are just thrilled beyond the moon.” She cites
    instead — the site of chapter meetings for many years.
                                                                                 the fabulous keynote speaker they’ve lined up — humorist and
    Since the founding of the Edmonton chapter, the Kuzyk family has             best-selling author Phil Callaway, who will talk about his family’s
    been stalwart members. Diane, John, Cheryl and Diana have all                experience with HD — as well as plenty of music and dance
    served on the executive for many years. With the chapter meetings            performances guaranteed to make the Friday night reception a
    now held at St. Joe’s, Diane continues to take part, although she            lively event.
    jokes that she now serves in an “ex officio” capacity.
                                                                                While Diane’s health has begun to deteriorate lately, the Kuzyk
    Over the years, Diane seized every opportunity to cram in                   family hopes she’ll be able to attend some of the conference and
    Huntington’s work between the demands of a nursing career and               reconnect with Ariel Walker, who has promised to be there. It
    raising four children. “I really have been amazed at the person             will be a fitting way to celebrate 34 years of involvement with
    my mother became because of the challenges of trying to do                  the Society. And, as Cheryl says, the Kuzyk family is all about
    something about the disease,” Cheryl says.                                  celebrations.


6
Delaying the Age of HD Onset
While there’s still no cure for HD, a new        spending long periods of time in passive        Your lifestyle as a teenager has the biggest
study from Down Under suggests that gene-        activities.                                     impact, researchers discovered, but
positive people can push back the onset of                                                       staying active in your 20s and 30s pays off
                                                 That doesn’t mean you can’t kick back in an
HD by changing their lifestyle.                                                                  as well.
                                                 armchair to watch your favourite TV show,
A survey of more than 150 people with HD         he emphasized in an interview with the          Interestingly, the study also revealed
in Australia and New Zealand revealed that       Australian Broadcasting Corporation in May.     that longer CAG length causes
people who were active — either physically                                                       more passive behaviour, even in
                                                 “All of us need down time,” explained
or intellectually — developed symptoms as                                                        adolescence — additional evidence that
                                                 Delatycki, who heads up the Bruce Lefroy
much as 4.6 years later than their couch                                                         signs of HD begin long before a clinical
                                                 Centre for Genetic Health Research at the
potato counterparts.                                                                             diagnosis. But even once that effect is
                                                 Royal Children’s Hospital in Melbourne.
                                                                                                 taken into account, too much time spent
Genetic factors such as CAG length have          “What we’re saying is don’t spend hours a
                                                                                                 watching TV, chatting on the phone or
the biggest influence on the age of onset, but   day in passive activities. Find activities in
                                                                                                 working at an undemanding job appears to
it’s now clear that the physical and mental      your life that have physical and intellectual
                                                                                                 hasten the onset of Huntington’s.
challenge of jobs, education and leisure         elements.”
activities also play a measurable role.                                                          So play a musical instrument, learn
                                                 The study results, published in the March
                                                                                                 a new language, hit the tennis courts
And while you can’t control your CAG length,     29 issue of Movement Disorders, back up
                                                                                                 or just take a walk. “For the first time,
you can control your lifestyle, making this a    lab experiments that show an enriched
                                                                                                 there is something that people at risk of
very empowering discovery.                       environment can delay the onset of HD
                                                                                                 Huntington’s disease can do to delay the
                                                 symptoms in mice. It also mirrors the results
Lead researcher Dr. Martin Delatycki                                                             onset and hopefully slow progression of
                                                 of similar studies in people living with
advises people who carry the gene to avoid                                                       the condition,” said Delatycki.
                                                 Alzheimer’s, Parkinson’s and dementia.



My Brain Matters                                                                                                       WELCOME TO
The NEUROLOGICAL HEALTH CHARITIES CANADA (NHCC) is a collective of organizations
that represent people with chronic, often progressive, neurological and/or neuromuscular
diseases, disorders, conditions and injuries (brain disorders) in Canada. The NHCC’s
                                                                       role is to provide                       s    rt of t                            ada
                                                                                                             in support of the Huntington Society of Canada

                                                                       leadership, evaluating
                                                                       and advancing new
                                                                       opportunities for
                                                                       collaboration specific
                                                                       to advocacy, education
                                                                       and research projects,
                                                                       related to brain
                                                                       health. HSC is an
                                                                       active partner in this
                                                                       organization along with
                                                                       17 additional sister
                                                                       charities all working
                                                                       together.
                                                                       The NHCC has recently
                                                                       launched a new
                                                                       website called My
                                                                       Brain Matters www.
                                                                       mybrainmatters.ca.
                                                                                                      Saturday, February 26, 2011
                                                                       Please take a moment          7:00 p.m. at the Liberty Grand
                                                                       to visit the site and
                                                                       register to receive the
                                                                                                       25 British Columbia Road,
                                                                       e-newsletter Brain                        Toronto
                                                                       Matters. Learn more                           Tickets $135
                                                                       about Canada’s Brain
                                                                       Strategy and the latest             www.hsccasinoroyale.ca
                                                                       research development.         casinoroyale@huntingtonsociety.ca
                                                                       Sign Up Today!


                                                                                                                                                              7
            Physicians sign up for HD 101
            Across North America, dozens of centres provide top-         responsibility to make sure that as many clinicians as
            notch care for people living with HD. They’re staffed        possible know how to do the right thing for people with
            by medical specialists who understand the nuances of         HD.”
            the disease, backed up by multi-disciplinary teams of
                                                                         After months of planning, the inaugural workshop
            physiotherapists, nutritionists, genetic counselors and
                                                                         last March proved to be a resounding success. A total
            social workers.
                                                                         of 35 neurologists and psychiatrists from across
            But where does that leave the thousands of others            the continent — 10 from Canada and 25 from the
            families — a full 80 to 90 per cent of people with HD,       U.S. — gathered in Ottawa for the weekend.
            according to U.S. estimates — who don’t have access to
                                                                         Some were recently qualified physicians, while others
            that expertise?
                                                                         had established practices but wanted more insight into
            It’s a question Ontario neurologist Mark Guttman has         the most effective ways to serve their Huntington’s
            been pondering. “How can we get more people involved         patients.
            in providing excellent care to Huntington’s patients?” he
                                                                         While the workshop was free for participants, thanks
            asks. Unless physicians happen to get their training at a
                                                                         to the generosity of CHDI, it certainly was no cakewalk.
            centre with large numbers of HD patients, their exposure
                                                                         Participants faced a gruelling schedule of neurology,
            to the disease can be extremely limited.
                                                                         psychiatry and genetics lectures coupled with breakout
            His answer: develop workshops targeting neurologists         sessions where they grappled with the details of specific
            and psychiatrists who treat HD patients but lack             cases.
            expertise.
                                                                         The weekend also included research updates and
            The goals were threefold: improve their clinical skills      presentations from HSC and HDSA on the services they
            in treating Huntington’s, convince more newly minted         provide. Despite the long hours, the room crackled with
            physicians to specialize in the disease, and increase the    energy and excitement.
            number of centres participating in clinical trials.
                                                                         “The feedback we got was excellent,” says Dr. Guttman.
            Together with Dr. Martha Nance, who directs the              “People really enjoyed it.”
            Huntington’s clinic in Minneapolis, he pulled together a
                                                                         If all goes well, the Ottawa workshop will be the first of
            two-day crash course. Dubbed “HD 101,” it’s modelled
                                                                         many. With only a little tweaking, Dr. Guttman believes
            on similar movement disorder workshops Dr. Guttman
                                                                         HD 101 could be run across North America on a regular
            has been running for Canadian neurology residents since
                                                                         basis. “I think it’s ultimately going to change how we help
            1992.
                                                                         clinicians help people with Huntington’s disease,” he
            CHDI agreed to fund a trial workshop, while HSC and the      predicts.
            Huntington’s Disease Society of America (HDSA) both
                                                                         HSC’s Jo Anne Watton agrees. “I was thrilled to see the
            came on board to help organize it. In fact, as Dr. Guttman
                                                                         number of physicians and psychiatrists coming together
            tells the story, former HSC Executive Director Don
                                                                         to discuss the care of people with Huntington disease,”
            Lamont actually hugged him after hearing the idea.
                                                                         says the Society’s Director of Individual and Family
            “It’s an unmet need,” the movement disorders specialist      Services. “I believe this will improve patient care across
             explains. “As so-called experts in the area, we have a      Canada.”




     Horizon
     is going green!
     Horizon is now being distributed
     electronically. If you would like to
    receive Horizon by email please fill
     out the contact form on the HSC
    website www.huntingtonsociety.ca
          or contact us directly at
        info@huntingtonsociety.ca
            or 1-800-998-7398



8
      Inaugurating the Huntington Society of Canada’s Great Canadians Series:

      A Commemoration of the Honourable James Jerome
On Tuesday October 5th, the Huntington Society of Canada will
launch the Great Canadians Series – a unique, national program
honouring great Canadians touched by Huntington disease who have
made significant contributions to our nation.
For our inaugural event, we’re delighted to salute the late James
Jerome, Speaker of the House of Commons from 1974–79, who
succumbed to Huntington disease in 2005. In addition to recognizing             About James Jerome
this widely respected parliamentarian and jurist, the event will raise          (March 4, 1933 – August 21, 2005)
funds for the Honourable James Jerome Great Canadian Fund.
                                                                                                           James (Jim) Jerome was a
The Honourable Peter Milliken, current Speaker of the House of                                             jurist, politician and widely
Commons, has graciously agreed to co-host the evening. This                                                admired speaker of the
reception will allow those who wish to honour James Jerome and his                                         House of Commons.
accomplishments to pay tribute to a Great Canadian.
                                                                                                            After graduating from
                                                                                                            law school, he ran a
                                                                                                            law practice in Sudbury,
    Great Canadians Series Honourary Committee
                                                                                                            Ontario for several
    The Honourable Peter Milliken                                                                           years before making the
    Speaker of the House of Commons                                                                         leap into politics. He
                                                                                                            began at the municipal
    The Right Honourable Joe Clark                                                                          level, winning a seat on
    and Ms. McTeer                                                                                          Sudbury’s city council in
                                                                                                            1966. The following year
    The Right Honourable John Napier Turner
                                                                         he ran unsuccessfully for the federal Liberal party in a by-
    The Honourable André Ouellet                                         election but took the seat in the 1968 general election and
    and Mrs. Ouellet                                                     held it through three subsequent elections.

    Senator Mike Duffy                                                   In 1972, Jerome was appointed Chairman of the Standing
                                                                         Committee on Justice and Legal Affairs. Heading up a
    Senator Marie Paule Poulin                                           committee dominated by opposition members, he quickly
    and Mr. Poulin                                                       developed a reputation for impartiality, good humour and a
                                                                         formidable grasp of parliamentary procedure – a reputation
    Lieutenant General (Retired) James Gervais                           that led to his appointment as Speaker of the House of
    and Mrs. Gervais                                                     Commons in 1974.
    Max Keeping                                                          He proved to be highly influential Speaker, playing a
    CTV Community Ambassador                                             pivotal role allowing television cameras into the House
                                                                         of Commons – making Canada the first country in the
    Jim Orban
    Publisher, Ottawa Citizen                                            world to broadcast complete coverage of its parliamentary
                                                                         proceedings – and launching the House of Commons Page
    Doris Ramphos                                                        Program, giving young Canadians an opportunity to witness
    Community Engagement Advisor                                         the legislative process first-hand.
    Ariel Walker                                                         Although power shifted to the Progressive Conservative
    Co-founder of the Huntington Society of Canada                       Party following the 1979 election, the new government chose
                                                                         to keep Jerome as Speaker – the first time a member of an
    Geoff Smith                                                          opposition party was chosen to preside over the Canadian
    President, EllisDon                                                  House of Commons. As Prime Minister Paul Martin later
                                                                         said, Jerome “brought dignity, an abiding respect for rules
                                                                         and traditions, and a deep commitment to Parliament as a
If you wish to make a contribution to the James Jerome Great             fundamental institution of Canadian democracy.”
Canadians Fund, please use the return form on the back of your
copy of Horizon and indicate that your donation should be directed       When a non-confidence motion triggered an election later
to this fund.                                                            that year, Jerome decided not to run again. Instead, he was
                                                                         appointed Associate Chief Justice of the Federal Court, a
                                                                         position he held until his retirement in 1998.
                                                                         Jerome developed Huntington disease late in life, passing
                                                                         away in 2005 at the age of 72.


                                                                                                                                           9
          CLIMBING HIGHER:
          The HSC National Conference 2010
                Family Life with
                Huntington Disease
                  The Early Years
The Huntington Society of Canada           This year’s special focus:
Invites You To Join Us                     Family Life with HD — The Early Years
For The HSC National Conference 2010         Knowledge Integration: More than 2 days of world-
                                             class speakers and interactive workshops covering the
                                             latest in HD research, care and tactics to enrich the HD
                                             community.
Sutton Place Hotel, Edmonton AB              Networking: A great opportunity for individuals
November 11–14, 2010                         affected by HD, caregivers, volunteers, professionals, and
                                             researchers to learn and connect with others in the HD
Hosted by the HSC Edmonton Chapter           community.

                                           Presentations include:
                                             • Fostering the healthy development of children and
                                               youth living in the Huntington community
                                             • Insights into the earliest stages of HD — before
                                               official diagnosis
                                             • Optimizing life with HD using the latest research
                                               discoveries
                                             • The benefits and limitations of pre-implantation
                                               genetic diagnosis
                                             • Updates on the fight against genetic discrimination



                                              Many engaging speakers including:
                                                Dr. Yvonne Bombard, Phil Callaway, Jeffrey
                                                Carroll, Dr. Wayne Martin, Dr. Oksana
                                                Suchowersky, Alicia Semaka, Dr. Ray Truant,
                                                Dr. Edward Wild, Dr. Benjamin Wong, and
                                                many more!




                                     For more information, call 1-800-998-7398
                                                        or
                                          visit www.huntingtonsociety.ca
     MEMBERSHIP DRIVE: Add Your Voice Today!
This Fall, the Huntington Society of Canada        stand in solidarity with HD families each         •	 Invitation	to	join	exclusive	CEO	Circle	
is having a membership drive to encourage          and every day. Government, foundations,              and receive personal updates from the
members of the Huntington’s community to           potential donors and the broader public              Society’s CEO via a quarterly phone
stand up and be counted.                           recognize us as a movement based on our              call — Lifetime Members Only
                                                   number of members.
Make your membership gift this fall and                                                              Please, stand up and be counted as a
start receiving your amazing benefits right                                                          member. Buy your annual or lifetime
away. You will be invited to an exclusive          Your Membership Benefits                          membership today and start receiving your
reception on Parliament Hill and invitation        As a member of the Huntington Society of          benefits right away. Make a promise to
and voting rights at our fall annual meeting.      Canada, you receive the following benefits:       families confronting HD and show them they
And if you join as a lifetime member you will                                                        are not alone.
also be invited to a special reception at the      •	 Invitation	to	exclusive	reception	on	
                                                      Parliament Hill launching The Great            We are calling on all members of our
conference and be included in our CEO’s
                                                      Canadians Series remembering The               community to stand up and be counted.
Circle.
                                                      Honourable James Jerome, former Speaker        Today.
Our members are partners in caring — there            of the House of Commons
is strength in our numbers. Canadians
living with HD, and their families, endure         •	 Invitation	to	any	HSC	event	in	your	
                                                                                                          You can use the coupon below to
discrimination and stigma associated with             community
                                                                                                           mail in your membership today.
this rare, complex and misunderstood               •	 Your	copy	of	Horizon, our newsletter,
disease. Our members add their voice to                                                                           You can also visit
                                                      delivered in print or electronically based
                                                                                                              www.huntingtonsociety.ca/
our chorus – and bravely step forward                 on your preference
                                                                                                                     membership
to be counted as a caring member of our
                                                   •	 Invitation	to	every	Annual	General	Meeting          for more information and to make
community.
                                                                                                           your payment online, or you can
                                                   •	 Voting	rights	at	Annual	General	Meeting
Our members receive tremendous benefits                                                                          call us right now at
for their support, but more importantly, our       •	 Invitation	to	join	a	special	reception	at	                  1-800-998-7398.
members represent a promise to the HD                 the Annual General Meeting — Lifetime
community: you are not alone. Our members             Members Only



                                                    RETURN                       FORM                                                         2200

 Enclosed is my Annual Membership donation ($25 per person)                 Method of Payment:
 Enclosed is my Lifetime Membership donation ($250 per person)               Cheque       Visa    Mastercard
 Enclosed is my donation of $ ____________ to further the fight             Credit Card # : _______________________________________________
    against Huntington disease.
                                                                             Expiry Date : ____________    Signature :_________________________
 I would like to remain anonymous

Please send me more information on the following programs:                   Name: ______________________________________________________
 Our Champions of Hope monthly giving plan
                                                                             Address: ____________________________________________________
 Ralph and Ariel Walker Summit Society
 Please contact me on how I can volunteer for the Huntington Society        _____________________________________________________________
    of Canada.
                                                                             _____________________________________________________________
 Please send me more information about getting involved in the
    Society’s fundraising programs.                                          City : _______________________      Province: ______________________
 Our Family Funds
                                                                             Postal Code: _________________      Phone #: ______________________
 Please add my name to the Horizon mailing list.
 Please remove my name from the Horizon mailing list.                       Email: _______________________________________________________


Please print the name(s) as you want it to appear for recognition purposes   Please note my change of address:
(eg. The Smith Family or Mr. & Mrs. John Smith or Mary & John Smith)
                                                                             _____________________________________________________________
_____________________________________________________________




Thank you
                                                                             _____________________________________________________________
                                                                             _____________________________________________________________
                                                                             _____________________________________________________________
                                                                             Effective : ___________________

                                                                                                                                                   11
 Dear HSC,                                                          disease. Unfortunately, the stigma of Huntington’s
                                                                    hasn’t completely disappeared.
 Dear HSC …                                                         Today there’s still a very real possibility of being
 What’s with all the talk about advocacy lately? Is this a new      refused insurance, charged unaffordable premiums,
 direction for the Huntington Society? I thought the goal of the    being passed over for promotion or even refused a
 organization was to fund research and provide family services.     job if you have a family history of HD.
 Claudia, Waterloo, ON                                              We need to speak up on this issue.
                                                                    That’s why we’re working with the Canadian
                                                                    Coalition for Genetic Fairness (CCGF) to end genetic
 Dear Claudia,
                                                                    discrimination — something that will benefit all
 Actually, HSC has a long history of speaking out to improve the    Huntington’s families as well as millions of other
 lives of Huntington’s families and make sure their needs are       Canadians at risk for genetic diseases.
 met. In a nutshell, that’s what advocacy is all about.
                                                                    By teaming up with other health charities and with
 At an individual level, our resource centre directors and          supportive politicians, we’re creating a powerful voice
 Individual and Family Services workers make sure families          for change. But your voice is important too.
 can access the community services they need. We also educate
                                                                    Consider calling, emailing or visiting your
 healthcare providers to make sure that people living with HD
                                                                    MP to explain that you want action on genetic
 get the best possible care.
                                                                    discrimination. Members of Parliament really do care
 At the community level, we advocate for better resources. The      about the issues facing their constituents, but they
 new multidisciplinary HD clinics we’ve helped to establish in      won’t know what’s important to you unless you tell
 Halifax, Ottawa and Saskatoon over the past year are excellent     them!
 examples of what we can achieve by making our needs known
                                                                    Need a little help approaching your MP? You can find some
 and working with partners to create solutions.
                                                                    great resources in the “Take Action” section of the CCGF
 Nationally, we’ve helped to bring Huntington’s out of the closet   website (www.ccgf-cceg.ca), or call Jo Anne Watton at HSC
 over the past 35 years, reducing the shame and stigma of the       National Office at 1-800-998-7398 ext. 32.




Return undeliverable Canadian addresses to:




151 Frederick St., Suite 400
Kitchener, Ontario
N2H 2M2

				
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