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					                                                                                                                                No. 123           Fall 2007




HSC Launches New Website
By Katie Reid, Communications Officer
The Huntington Society of Canada (HSC)
has made its mark on the World Wide Web.
HSC has launched a new website, showcas-
ing its new brand and many new features
designed to increase its visibility, and its
visitors.
In this day and age technology is the central
communication tool in our lives, and HSC
has taken a step forward to fully utilize all
the capabilities of the medium to reach the
HD community, not only in Canada, but also
around the world.
The new website will be the central com-
prehensive interactive communication tool
for the Society. It allows HSC to communi-
cate with all its stakeholders and audi-
ences: HD individuals and their families,
donors, volunteers, researchers, profes-
sionals serving the HD community, and the
general public. The new site allows HSC to
inform, engage and involve them all.
Below are some of new website features:

Easy to use interface on both front and
back end
Aside from showcasing the new HSC brand
the new website is very user-friendly and
easy to navigate. An important feature,                       starting a chapter website as you don’t need     Volunteer websites
aside from the ease of navigation, for web-                   to know HTML or have technical knowledge.        A great feature for all Chapter across the
site visitors is the user-friendly interface                                                                   country. As already noted above the websites
                                                              Dynamic map
on the back end of the site. This is a great                                                                   are easy to manage. The volunteer websites
feature for chapters interested in having or                  An interactive map of the entire country is on   are hosted directly off the HSC National
                                                              the site with colour coded contact informa-      page and use the same branding ensuring a
                                                              tion making it easy to find needed services      consistent image and link to National, while
                                                              across the country.
                    INSIDE                                                                                     also allowing for a focus on local Chapter
                                                                                                               information.
                                                              Calendar of events
  New HSC Brand ..................................... 2       Displays events happening across the coun-       Message boards
                                                              try in a weekly or monthly format.               A great feature that will bring together the
  Reach for the Summit
  in 2007-2008 ......................................... 3    Search                                           HD community and allow discussion on all
                                                                                                               HD topics.
                                                              This capability is available on every page
  Research Update .................................... 4
                                                              making it easy to find what you are looking      HTML email newsletters
  HSC Chapters Raise                                          for.                                             The ability to sign up to receive email news-
  Community Awareness .......................... 8                                                             letters and select your topics of interest, so
                                                              Member log-in
                                                                                                               we are able to target your interests and get
  Dear HSC ............................................. 10   Help to target information while also allow-
                                                                                                               you more timely communications.
                                                              ing HSC to communicate with its desired
                                                              audience.
                                                                                                                                           continued on page 2
New Brand for the Huntington Society
By Katie Reid, Communications Officer                   seeks to increase the product’s perceived         Our new brand encompasses a new cleaner
The Huntington Society of Canada has got-               value to the customer and thereby increase        and more modern look including a new
ten a makeover! You will have noticed that              brand credibility and brand awareness.            colour scheme. We have moved from the
this issue of Horizon has a new look. As                When staff, volunteers, donors, clients et al.    green and magenta colour scheme to a more
announced in the last issue, the Huntington             see continuity in a brand, the brand becomes      subdued palette of blue and beige. Along with
Society of Canada (HSC) has unveiled a new              more valued and credible in all areas of the      the new colour scheme, a new image also
brand that will be appearing on all its materi-         business.                                         appears throughout the branded materials.
als.                                                    We were fortunate to work with OgilvyOne          The Huntington flower found in both our old
                                                        Worldwide on our rebranding. OgilvyOne, a         and new logo has been adapted to appear as
The new brand was launched this past May                                                                  a watermark on the side of the materials. The
and you may have already seen the new look              world-renowned advertising agency worked
                                                        with HSC on creating a new brand that             new colours and image are the new distinc-
on various materials from the Society, includ-                                                            tive markers of HSC.
ing letterhead, publications, event materials           encompassed the values of the organization
and our new website (see page 1).                       and conveyed to the public an image that          You will continue to see the new brand as
                                                        matched the caliber of work being done by         we phase in all of our materials and publica-
A brand is a collection of images and ideas             the Society.                                      tions. We hope you enjoy our new look!
representing our organization, more specifi-
cally, a brand refers to the concrete symbols
such as a name, logo, slogan, and design
scheme. The HSC brand appears on all ele-
                                                           HSC Launches New Website
                                                           continued from page 1
ments produced by our organization such as
letterhead, envelopes, booklets, our website               Video on demand                                • In addition to single donations and hon-
and newsletters such as this one.                          Allows for a large audience to have ex-          our donations the site allows for new
                                                           posure to educational material, which is         types of donations to be accepted online
Utilizing a common theme in our marketing
materials provides continuity. The brand                   easy to access.
                                                                                                          Event Ticket Sales
                                                           Opinion poll                                   Chapters and staff can sell tickets for
                                                           Easily gather information from those visit-    events/activities online. This system will
                                                           ing and using site. Allows for targeting and   also be utilized to sell cases of amaryllis
                                                           tailoring of information                       plants online to interested clients (this is
                                                                                                          a key fundraising initiative).
                                                           New Online Giving Capacities
                                                                                                          Most of the features are currently avail-
                                                           This new online donation system provides       able, but others will be available at a
                    ISSN 0827-7605
                                                           multiple opportunities to give throughout      later date. The website will be constantly
     Horizon is the newsletter of the Huntington           the website.
     Society of Canada. Published three times per                                                         updated, so keep checking back for the
     year (Spring, Fall and Winter), its purpose           • Provides a comfortable and easy system       latest HD news, and to connect with the
     is to convey information to individuals with
                                                             for the donor to use                         HD community across Canada and around
     Huntington disease and their families, health
     care professionals, friends and supporters.                                                          the world.
                                                           • Ensures that the donor’s information is
     Huntington disease is a hereditary brain                secure
     disorder which has devastating effects on both
     body and mind. The symptoms, which may
     include uncontrollable jerking movements and
     relentless cognitive and emotional impairment,
     usually appear between the ages of 30 and 45,
     and gradually worsen over the 10-25 year course       The Huntington Society of Canada’s
     of the disease. As yet, there is no cure.
                                                           NAVIGATOR research program is
     The Huntington Society of Canada is a national
     non-profit charitable organization founded in         supported by the following funds:
     1973 to help individuals with Huntington disease
     and their families.                                   Benefactor:
                 Editor: Katie Reid
                                                           Sun Life Financial
           Associate Editor: Edward Bird
            Distribution: Shirley Barnes
          Layout: Real World Graphic Design
     Horizon welcomes your comments, ideas and
     suggestions for future articles. Please contact:      Leadership Partners: AGF Group of Funds; George Weston Ltd.;
             Huntington Society of Canada                  The Joseph S. Stauffer Company; TELUS Community Connections
              151 Frederick St., Suite 400                 Family Fund Partners: Barrett Research Fund; Bloom Family Fund; The Kelly Bum-
                Kitchener, ON N2H 2M2
                                                           stead Family Fund ; Chaplin Family Fund; Cranston-Dorr Family Fund; Annie J. Cutler
        Tel: (519) 749-7063 • Fax: (519) 749-8965
           Email: info@huntingtonsociety.ca
                                                           Memorial Fund; Janice Johnson Family Fund; Sylvia Hickson Family Fund; Irwin
          Web site: www.huntingtonsociety.ca               Family Fund; Kidd Family Fund; McArthur Family Fund in memory of Megan McArthur;
     Charitable Registration #: 11896 5516 RR0001          Skene/Stevens Family Fund; Skeoch Family Fund; Sterling Family Fund; Wiswell Fam-
                                                           ily Fund; Wright Family Fund in memory of Helen-Mary Wright


 2
Reach for the Summit:
HSC National Events in
2007 & 2008
By Wayne Greenway and Jo Anne Watton             string of accomplishments. A generous gift
For more than three decades, the Hunting-        from the Devlin Fund for Families to bolster
ton’s community has been united in the           our Individual and Family Services program
search for a cure for HD. When Ralph and         inspired our chapters and area representa-
Ariel Walker created the Huntington Society      tives to raise more funds than they imagined
of Canada in 1973, it seemed an impossi-         possible.
bly distant goal – a Mount Everest halfway       At the same time, we’ve built a stronger
around the world. Year by year, however, that    team than ever, thanks to initiatives such as
target has grown from a tiny speck on the        regional training sessions across Canada.
horizon to a peak directly above us, filling     Most importantly, our work over the years is
our frame of vision.                             paying off with research breakthroughs like
In 2006, we celebrated our arrival at a sym-     the prevention of HD in mice announced last
bolic base camp, thanks to an impressive         year.


Join the Climb – Huntington Society of Canada’s National Events 2007 & 2008
              HSC Regional Chapter              HSC Regional             2008 HSC National
               Development Days                 Family Days                 Conference              Now we’re poised to begin the toughest but
                                                                                                    most rewarding part of the journey – the
 Who          HSC volunteers and their    Individuals living with      The finest minds in HD
                                                                                                    climb from base camp to the summit. To kick
              guests                      HD, families, friends,       research, together with
                                          caregivers, researchers,     individuals living with      it off, we’ve planned three Reach For The
                                          health care professionals    HD, families, friends,       Summit initiatives in 2007 and 2008 that are
                                          and government decision      caregivers, researchers,     guaranteed to leave you feeling energized and
                                          makers                       health care professionals,   ready to tackle the challenges ahead.
                                                                       volunteers, government
                                                                                                    Beginning the Ascent
                                                                       decision makers, and
                                                                       students                     This fall we’re offering Regional Chapter De-
                                                                                                    velopment Days tailored to meet the different
 What         Reconnect with other        Hear the most up-to-         Strengthen your capac-
                                                                                                    needs of HSC volunteers across the country,
              volunteers to learn and     date information on          ity to manage HD and
                                                                                                    build local capacity, and foster teamwork.
              share from each other’s     Huntington disease from      broaden your support
              experience.                 internationally recognized   network.                     In the spring, we’ll be hosting Family Days
                                          speakers.                                                 in every region of Canada using a combina-
              Learn new skills to                                      Learn about the new-
              strengthen your chapter     Interact with speakers       est developments in HD       tion of local speakers and interactive video
              in the fight against HD.    and participants in other    research.                    conferencing. To the best of our knowledge, it
                                          regions using the latest                                  will be the first time a Canadian Charity takes
              Get the latest updates                                   Build a stronger organiza-   advantage of technology in this way!
                                          in video conferencing
              on our progress as an                                    tion ready to tackle our
                                          technology.                                               Finally, our Charlottetown Chapter and the
              organization.                                            new goals.
                                          Participate in workshops                                  HSC National Office are teaming up to create
              Become more united in                                    Make connections and
                                          or small group discus-                                    the HSC National Conference 2008 next
              our climb to the summit.                                 foster your professional
                                          sions with local experts.                                 fall – a conference that promises to be our
                                                                       development.
                                                                                                    best yet.
 Where &      Contact Ann Wipp            Saturday April 26,           Thursday, October 30
 When         for more information        2008                         to Sunday,                   So sharpen your ice axes, strap on your cram-
              1-800-998-7398              St John’s, Halifax,          November 2, 2008             pons, and prepare to climb to some exhilarat-
                                          Calgary, Edmonton,                                        ing new heights in the coming year!
                                                                       Charlottetown, Prince
                                          Vancouver
                                                                       Edward Island
                                          Saturday June 7, 2008                                           Do you have ideas for topics or
                                          Toronto, Ottawa, Sudbury,                                   speakers for small group presentations
                                          Winnipeg, Saskatoon                                         at the 2008 HSC National Conference?
                                                                                                           We want to hear about them!
 How to       Contact your Chapter        Look for registration        Look for registration                   Email Shirley Barnes at
 Register     President or Area           information in the next      information in Horizon              sbarnes@huntingtonsociety.ca
              Representative.             issue of Horizon.            in 2008.


                                                                                                                                                3
Research Update
By Don Lamont, CEO and Executive Director         to see results and therefore it is important       bon, Dr. Ray Truant, Dr. Simonetta Sipione,
The Huntington Society of Canada (HSC)            to support the most promising, high priority,      and Dr. Samuel Weiss.
aspires to a world free from Huntington           areas that will eventually lead to effective
                                                                                                     Our Research Council, which oversees the
disease. The Society strives to:                  treatments. Families and donors have vari-
                                                                                                     NAVIGATOR program, is world-class and
                                                  ous interests and the Society also wants to
• Maximize the quality of life of people living                                                      includes:
                                                  further an integrated, and comprehensive
  with HD by delivering services;                 approach to fundamental treatments over the        Dr. Harold Robertson
• Enable others to understand the disease;        longer term, as well as to provide immediate       Dr. Lynn Raymond
                                                  symptomatic relief.                                Dr. Gillian Bates
• Further research to slow and to prevent HD.                                                        Dr. Eileen Denovan-Wright
                                                  From a business viewpoint, the Society also
With this mission, research is certainly in-                                                         Dr. Michael Hayden
                                                  strives for consistency in its research spend-
tegral to the work of the Society. HSC began                                                         Dr. Ray Truant
                                                  ing, and seeks to plan our expenditures on a
as a grass roots movement back in the early                                                          Dr. Marcy MacDonald
                                                  multi-year basis. And, we feel we are doing
1970’s with a strong orientation to services      that effectively.                                  Harold Robertson has provided wonderful
and helping families and therefore we built                                                          leadership over the years. Ray Truant has
our Individual and Family Service (IFS)           Figure 1 is a diagram of HSC’s current
                                                                                                     been been nominated to fill the position of
programs first. Many other national health        research funding program. The diagram out-
                                                                                                     Chair of the Research Council. Last sum-
charities began with a focus on research and      lines the key organizations in North America
                                                                                                     mer we received good news about how Dr.
developed more services over the years. With      and their positions in the HD discovery
                                                                                                     Hayden’s lab had stopped HD in a mouse,
funding for our IFS programs now in place         process for basic, translational and clinical
                                                                                                     and this summer Ray published an important
(thanks in large part to the generosity of our    research. We discussed how this discovery
                                                                                                     paper adding new insights about how HD is
donors) HSC is working hard to increase its       process works in the Spring 2006 edition
                                                                                                     triggered and offering a new drug target.
collective contribution to research, first by     of Horizon. The HSC markers indicate the
directing more resources to research and          places where the Society is now investing its      This spring, HSC signed an agreement with
second by striving to heighten its impact.        resources.                                         the Canadian Institure of Health Research
                                                                                                     (CIHR), the federal government’s research
Last winter HSC announced certain changes         Under the category of basic research, which
                                                                                                     funding arm, to promote Huntington disease
to its research program and this article          is funded by the Ralph Walker Fund, the
                                                                                                     research in Canada, and to attract and keep
provides a progress report. First, I will speak   Society continues to operate the NAVIGATOR
                                                                                                     scientists in the field and foster excellence.
to the basic principles underlying HSC’s ap-      Research Program. This program supports
                                                                                                     HSC will fund one or more Pre-Doctoral
proach to research. Second, I will explain our    basic scientific research of direct and im-
                                                                                                     Fellowship Awards, one or more Doctoral
current activities.                               mediate relevance to Huntington Disease in
                                                                                                     Research Awards and will contribute to the
                                                  Canada with the aim of providing a platform
The coordinated, international campaign                                                              top ranked Huntington disease researcher in
                                                  for the future recruitment of outstanding
to slow and eventually prevent HD is truly                                                           the national competition. Scientists interest-
                                                  investigators to HD research, to facilitate
an exemplary model for others to follow.                                                             ed in these opportunities can apply through
                                                  research collaboration nationally and inter-
Canadians have been leaders in this process                                                          the CIHR competitions, described on the
                                                  nationally, and to support research that is
for many years and the Society aims to carry                                                         CIHR website (www.cihr.ca), which are now
                                                  relevant to other neurodegenerative disor-
on that tradition. There are no borders to HD                                                        underway. Through this agreement the Soci-
                                                  ders. To better prioritize projects, we now
and every organization in the international                                                          ety takes advantage of CIHR’s grant review
                                                  hold one competition per year, normally in
movement must work together as one for the                                                           process to attract candidates and rank appli-
                                                  the spring. This spring a grant was awarded
greater good. It’s also important for every                                                          cations, and adds support for newly trained
                                                  to Michael Hayden’s lab at the Centre for
participating organization to be very focused,                                                       doctors to leverage the investments already
                                                  Molecular Medicine and Therapeutics
to play to their strengths and to find their                                                         made in these scientists – both to keep them
                                                  (CMMT) in Vancouver to study The Role of
own unique niche or role. HSC’s research                                                             in the HD field and to generate important re-
                                                  Huntingtin Phosphorylation (phosphate) in
strategy must overlay or complement the                                                              search. The agreement also provides a base
                                                  the Pathogenesis of HD.
international campaign and we should find                                                            from which HSC can develop a relationship
ways to leverage our contribution to make         In recent years the NAVIGATOR Research             with CIHR to expand the understanding of
the entire process better. In other words, a      Program has funded various projects that           and the support for, HD research in Canada.
key tenant of HSC’s approach is to partner        have increased knowledge about HD in
                                                                                                     In August, HSC representatives attended an
with world-class organizations to make use        important areas such as phosphorylation,
                                                                                                     important meeting, in New York held by the
of their resources and expertise to help to       calcium channels, calpain inhibitors, choles-
                                                                                                     High Q Foundation, of scientists and organi-
influence the direction of HD research in         terol metabolism, the role of FEN1, defining
                                                                                                     zations who fund neurological research. HSC
Canada and abroad.                                protein-protein interactions, modulating hun-
                                                                                                     is now exploring new opportunities to coordi-
                                                  tingtin levels, transplantation of neural cells,
The Society has a responsibility to continue                                                         nate funding for HD research. Working within
                                                  and SiRNA. We have also helped to support
to attract and retain Canadian research                                                              a larger community, the Society is excited
                                                  key Canadian scientists such as Dr. Susan
scientists to contribute to the international                                                        about the potential to fund the most promis-
                                                  Andrew, Dr. Janice Braun, Dr. Edmond Chan,
effort and also an obligation to support the                                                         ing, high priority research projects anywhere
                                                  Dr. Francesca Cicchetti, Dr. Eileen Denovan-
best science in the world wherever it takes                                                          in the world and/or develop new ideas or
                                                  Wright, Dr. Michael Hayden, Dr. Martin Lep-
place. HSC invests in HD research on behalf                                                          tools which enable the research community
                                                  age, Dr. Blair Leavitt, Dr. Geraldine MacGib-
of Canadian donors. We know donors want                                                              generally to gain more traction.

 
Futhermore HSC and the Huntington Study            with manifest HD. These projects should be           numbers of individuals available to partici-
Group (HSG) are interested in developing           completed by December 2008 and it is hoped           pate in clinical trials is an essential compo-
therapies in the near future that offer relief     they will provoke interest among commercial          nent of any discovery process. Therefore,
to individuals living with Huntington disease      companies to further develop symptomatic             HSC is interested in encouraging qualified
today, while essential basic science and           treatments for HD .                                  sites in various parts of the country to con-
translational research proceed to develop                                                               sider joining the HSG program. Canadians
                                                   This is the second unique project jointly
therapies that will treat/ modify the underly-                                                          already are substantial contributors to HSG
                                                   sponsored with the HSG. We are also
ing disease. We know family members deeply                                                              studies, but wouldn’t it be great if we became
                                                   co-funding a single site clinical trial at the
appreciate the vital work being done to fur-                                                            the international pace setter?
                                                   Oregon Health and Science University in
ther the basic science essential to unlocking
                                                   Portland to evaluate Tauroursodeoxycholic            Altogether, the Huntington Society of Canada
meaningful treatments. While we are getting
                                                   Acid, an antiapoptotic agent (dealing with           is moving forward with a comprehensive
closer to these treatments, the timeline is
                                                   programmed cell death).                              research strategy built upon our unique
still uncertain. Families naturally want help
                                                                                                        strengths, in collaboration with the world-
today. Working in partnership with the HSG,        Aside from straightforward medical re-
                                                                                                        wide campaign. We will continue to adjust
using funds raised through the Laura’s Hope        search, a complimentary relationship exists
                                                                                                        and refine this program as conditions evolve.
Fund for clinical research, HSC recently           between Individual and Family Services and
put out a request for one or two proposals         medical research. A key link between the two         These are exciting times for HD research and
from scientists in North America, Australia        lies with the connection between preclinical         the Society is providing Canadian research-
and Europe to test experimental treatments         research registries and introducing families         ers, families and donors with key opportuni-
in humans that show promise of providing           to clinical trials. The opportunity to partici-      ties to become part of the solution. Please
demonstrable symptomatic benefit for the           pate in a clinical trial is an important part of     join us to create a world free of Huntington
cognitive (intellectual), motor, behavioral or     the continuum of care for any person living          disease!
weight maintenance problems facing patients        with HD. Ensuring that there are sufficient
                                                                                                                                                  Figure 1



                                           HSC’s Research Strategy
                       To attract/retain top quality scientists and fund high priority basic neurological research and novel clinical
                       research for immediate relief in partnership with the coordinated, international campaign. Be world leader
                       in Huntington Study Group trials




     Basic                            From Finding Needles in a Haystack to Sorting Needles




             NAVIGATOR                                                                                             CIHR
                           HSC                                  HSC
                                                                                                       HSC                        *Accessible database
                                                                                                                                  about findings by

   Translational                                    High Q Fdn & others                                                           topic; common mouse
                                                                                                                                  model; bring
                                                      CHDI (Biotech Co*)                                                          researchers and drug
                                                                                                                                  companies together to
                                                      Select Research - Create Tools                                              collaborate; develop
                                                                                                                                  biomarkers to
                                                                HSC                                                               measure disease
                                                                                                                                  progression;
                                                                                                    Huntington                    consistent compounds
                                                             Unique Projects
                                                                                                     Project                      for use in
   Clinical                                      Huntington Study Group                               (Databank)                  experiments, establish
                                                                                                                                  priorities for basic and
                                                                 sites                                                            pre clinical research,
                                                                                                                                  open IP policy,
                                                             Families                                                             commission work, etc.

            www.huntingtonsociety.ca                            HSC


                                                                                                                                                         
Huntington Disease Clinics in Canada
By Jo Anne Watton, Director of Individual and    sible for individuals affected with HD and         Clinic is conducting two research studies:
Family Services                                  their families. Since then a multidisciplinary     PHAROS and Predict HD (for more informa-
The Huntington Society of Canada (HSC)           team has been meeting regularly.                   tion on the clinical trials please visit
has been actively working in and developing                                                         www.huntingtonstudygroup.com.
                                                 The multidisciplinary team includes Dr.
clinics that support individuals and families    Michael Hayden (geneticist), Dr. Lynn Ray-         Clients are provided with ongoing support
who are affected by Huntington disease           mond and Dr. Blair Leavitt (neurologists), Dr.     and are referred to the Northern Alberta
(HD). There are clinics currently operating      A.D.Goumeniuok (psychiatrist), Susan Tolley        Resource Centre who assist those individuals
in North York, North Bay, and Sudbury, in        (Director HSC BC HD Resource Centre),              and their families.
Ontario, Calgary and Edmonton in Alberta         Susan Creighton (genetic counsellor), and
                                                                                                    For more information please contact the
and Vancouver, BC. In addition to these clin-    Joji Decolongon and Allison Coleman (clinical
                                                                                                    Northern Alberta Huntington Disease
ics, the Halifax area has been able to secure    research coordinators). The patient meets
                                                                                                    Resource Centre at (780) 434-3229 or
funding and support for the development of a     with members of the team; in turn the team
                                                                                                    svincent@huntingtonsociety.ca.
HD clinic.                                       help the family physician arrive at the best
Research has shown that a multidisciplinary      care possible for the patient with HD. In ad-      Calgary, AB
clinic is one of the most effective ways of      dition, the clinic serves to assess patients for   By Loretta Young, Southern Alberta Hunting-
treating and supporting those with HD. HSC       entry in clinical trials.                          ton Disease Resource Centre Director
is actively working with chapters, and indi-     When a patient requires other special-             The Calgary Huntington Disease Clinic
viduals in local communities, such as Ottawa     ist help, referrals are made to the health         was established as part of the Movement
where there is currently no such care, to        authority programs where the person lives,         Disorders Clinic 23 years ago at the Health
develop innovative approaches to multi-disci-    or where communities do not have this              Sciences Centre (Foothills Hospital) through
plinary care for those affected by Huntington    specialized coverage. As well, patients can        the work of a Neurogeneticist, Nurse and
disease.                                         be referred to another provincial outpatient       Psychiatrist, all of whom are still working
Following is short profiles and summaries of     program at the GF Strong Rehab Centre. The         with the clinic.
the multi-disciplinary clinics that are cur-     centre has a Neuromusculoskeletal Program
                                                 whose core team includes a dietician, oc-          While the clinic is multidisciplinary some
rently operating across Canada. For more in-                                                        services are located at other local facilities
formation about these clinics, please contact    cupational therapist, physiotherapist, and
                                                 speech language pathologist.                       such as the presymptomatic testing clinic,
your local HSC Resource Centre Director.                                                            which is located at the Alberta Children’s
                                                 The Department of Medical Genetics is              Hospital.
Vancouver, British Columbia                      located at UBC Hospital, at the University
By Susan Tolley, BC Huntington Disease           of British Columbia. They can be reached at        The following professions currently par-
Resource Centre Director                         (604) 822-7738. For more information please        ticipate in the HD clinics: Neurogeneticists,
                                                 contact the BC Huntington Disease Resource         Neurologists, Nurses, Clinical Research
The Huntington Disease Medical Clinic
                                                 Centre at (604) 822-7195 or                        Nurses, and Psychiatrists. Referrals are
serves the entire province of British Colum-
                                                 stolley@huntingtonsociety.ca.                      made to other departments/professions
bia. BC alone has a population of 4 million,
                                                                                                    when necessary such as Neuropsychology,
and families even travel to the clinic from
                                                 Edmonton, AB                                       Speech/Language Pathology, Swallowing
the Yukon Territory, which has a popula-
                                                 By Sally Vincent, Northern Alberta Hunting-        Clinic, Diagnostic Imaging, Homecare/Com-
tion of 31,000. There are approximately 650
                                                 ton Disease Resource Centre Director               munity Access, and the Southern Alberta HD
HD –families on the clinic records, but that
                                                                                                    Resource Centre.
number is increasing by at least 20 new HD       The Movement Disorder Clinic is located at
families per year. Additionally, referrals are   the Glenrose Hospital in Edmonton, Alberta         Some of the members of the clinic team are
received from the states of Washington and       and provides assessment, diagnosis and             active participants in the local HSC Calgary
Alaska, and periodically patients come from      treatment for individuals with HD in North-        Chapter cementing the relationship between
other provinces in Canada.                       ern Alberta.                                       the two groups. The Psychiatrist and/or Neu-
                                                                                                    rogeneticist will speak at Information/Sup-
Predating the HD Medical Clinic in its pres-     The clinic has worked with clients with HD
                                                                                                    port meetings as requested, or offer group
ent form, Dr. Michael Hayden established         since 1990. Clients are referred through a
                                                                                                    sessions, together with the Resource Centre
a predictive testing centre in 1986. Within      family doctor or specialist. Dr. Wayne Martin
                                                                                                    Director, to groups of those affected by HD,
this clinic, as well as giving predictive test   is the clinical lead in the clinic, along with
                                                                                                    such as couples, and caregivers/care-part-
results, he also diagnosed many patients         Research Assistant, Marguerite Wieler,
                                                                                                    ners. Additionally, a multidisciplinary clinic
with HD and followed these patients on an        and Clinical Research Nurse, Pam King. In
                                                                                                    is also offered twice a year at the Carewest
annual basis. During this time, the University   addition to seeing clients at the Edmonton
                                                                                                    Dr. Vernon Fanning Centre for residents of
of British Columbia (UBC) also served as the     location, Dr. Martin also does an onsite clinic
                                                                                                    that centre.
site of a major clinical trial for symptomatic   in Camrose every 4 to 6 months and has
persons with HD, testing the efficacy of         provided this service since 2003.                  The Calgary Clinic is an active participant of
lamotrigine. Overwhelmed by the need for                                                            the Huntington Study Group and as a result
                                                 The Movement Disorder Clinic is actively in-
medical management for his patients, Dr.                                                            individuals from Alberta, parts of Saskatch-
                                                 volved in Huntington Study Group initiatives,
Hayden assembled a team in September                                                                ewan and British Columbia can have access
                                                 which as mentioned above conduct clinical
1996 in order to provide the best care pos-                                                         to all studies. Mary Lou Nicholson Klimek is
                                                 trials. Presently, the Movement Disorder
                                                                                                    the Site Coordinator for all HD Research.

 
To participate in clinical trails or research,    The clinic is located in the Women’s Trib-        clinical trails for HD drugs, and visits clients
individuals simply need to express an             ute Memorial Lodge, on the grounds of             in the communities of North Bay, Sturgeon
interest by approaching Mary Lou, or Genetic      Deer Lodge Centre. (Deer Lodge Centre is          Falls and Sudbury on a regular basis.
Counsellor Linda MacLaren or the Resource         a progressive 487-bed long-term care and
                                                                                                    Anyone residing in Northern Ontario can
Centre Director. The Southern Alberta             rehabilitation facility providing a variety of
                                                                                                    contact the Northern Ontario Huntington
Huntington Disease Resource Centre can be         in-patient, outpatient and outreach programs
                                                                                                    Disease Resource Centre for more
reached at (403) 284-5651 or                      to the community.)
                                                                                                    information at (705) 969-9771 or
lyoung@huntingtonsociety.ca.
                                                  The Manitoba Huntington Disease Resource          jdenomme@huntingtonsociety.ca
Winnipeg, MB                                      Centre can be reached at (204) 772-4617 or
                                                  sfunk@huntingtonsociety.ca                        North York, ON
By Sandra Funk, Manitoba Huntington Dis-
                                                                                                    By Rozi Andrejas, Toronto Huntington Dis-
ease Resource Centre Director                     North Bay, ON                                     ease Resource Centre Director
The Movement Disorder Clinic in Winnipeg          By Julie Denomme, Northern Ontario Hun-
                                                                                                    Initial discussion about the formation of a
has been in operation since September 2006.       tington Disease Resource Centre Director
                                                                                                    Huntington Disease Clinic began in the win-
It has been established to provide a multi-
                                                  The Center for Movement Disorders, North-         ter of 1995 at North York General Hospital.
disciplinary approach to the care of those
                                                  ern Huntington Clinic has been in operation       This joint meeting was between the Hunting-
affected by Parkinson’s disease, Huntington
                                                  for over 10 years. Under the leadership of Dr.    ton Society of Canada (Ralph Walker and col-
disease, Dystonia and other movement
                                                  Mark Guttman, the multi-disciplinary team         leagues), and North York Hospital (Dr.Wendy
disorders. The Manitoba Huntington Disease
                                                  is comprised of Dr. Guttman, the neurolo-         Meschino, Anne Summers, and colleagues).
Resource Centre has recently relocated its
                                                  gist, Francine Robert, clinic coordinator and     Discussions centered on the purpose of
office into the clinic. We are very pleased to
                                                  genetic nurse, and Julie Denomme, Director        forming a multidisciplinary clinic- aimed at
be invited into this partnership.
                                                  of the Northern Ontario Huntington Disease        improving services for patients, and creating
The clinic team includes two movement             Resource Center.                                  opportunities for the team to share ideas and
disorder neurologists; Dr. Douglas Hobson                                                           research potentials.
                                                  Clients are referred to the clinic through dif-
and Dr. Andrew Borys. The rest of the clinic
                                                  ferent venues, however everyone is required       A process by which clients would be seen
is comprised of Shaun Hobson (Movement
                                                  to obtain a referral from their family doc-       at the clinic was established, including the
Disorder Nurse/Clinical Research Coordina-
                                                  tor. Referred clients are seen face to face       decision for the team to not see the patients
tor), Joanne Malenko (Movement Disorder
                                                  for their initial visit, with follow up through   when they initially received results. For those
Nurse, partly funded by Parkinson Society
                                                  the North Network Telemedicine every six          patients who received a positive test result,
Canada)), Sandra Funk (HD Resource Centre
                                                  months. Those supporting the client and the       the entry point would be the neurologist with
Director and Movement Disorder Social
                                                  client themselves are connected through           other services plugged in as the need arises.
Worker), Robin Walmsley (Neurophysiology
                                                  the Telemedicine teleconference unit and          The service team was outlined as: neurology,
Technologist), Ina Varga (Doctor’s Assistant),
                                                  the nurse on location is trained to do the        genetics, psychiatry, social work (provided
Renee Worrell (Receptionist). A Neurosur-
                                                  neurological exam that is supervised by Dr.       by the Huntington Society of Canada) speech
geon, Dr. Jerry Krcek, is also part of the
                                                  Guttman. Any medication prescribed is faxed       and swallowing. Family members book
team. He operates at the Health Sciences
                                                  to the pharmacy and a letter of the examina-      appointments in advance, although some
Centre and implants Deep Brain Stimulation
                                                  tion is sent to the family doctor. This allows    exceptions are made to calling those without
(DBS) and sees patients for follow-up. Renee
                                                  individuals to stay in their hometown for an      families due to the complications associated
Kreck (DBS Nurse Clinician) and Andrea
                                                  extended period though the progression of         with disease progression.
Kilgor (the neuropsychologist who does the
                                                  the disease.
DBS psychological assessments) are also                                                             Team meetings occur at the beginning of the
located at the clinic. In the very near future    In addition his, the clinic is conducted onsite   day to review all clients who have appoint-
there will be a geriatric psychiatrist, occupa-   in the Sturgeon Falls, North Bay and Sud-         ments on that particular day. Clinic days are
tional therapist, physiotherapist, and speech     bury area. Once a year the clients are seen       held twice monthly on a Wednesday.
language pathologist joining the team.            face to face. The Team is actively involved
                                                                                                    The clinic has partnered with researchers at
                                                  with clients and they do follow-up with them
Quality individual patient care is the primary                                                      several centers to offer patients an oppor-
                                                  regularly in between clinic appointments.
goal of the clinic team. The next priority is                                                       tunity to participate in a wide range of HD
                                                  They make sure that any referrals to re-
to educate other healthcare professionals to                                                        related research groups. .
                                                  quired services are made and that significant
enable them to provide quality care for their                                                       The Toronto & Area Huntington Disease
                                                  changes in situation are reported to all team
patients with movement disorders. As well,                                                          Resource Centre can be reached at
                                                  members.
ongoing medical and surgical research trials                                                        (416) 494-1221 or torc@huntingtonsociety.ca.
for Parkinson’s disease and other disorders       Dr. Guttman is an active participant in the
are being conducted at the clinic.                Huntington Study Group, which conducts

  It is with regret that we will be saying good-bye to one of our valuable IFS members, Charlene Heyer. As of the end of July 2007, Charlene
  will be moving to focus her energies on family and her full-time employment. Charlene came to The Society with a vast knowledge in social
  work within the health care field and systems in the Hamilton area. She established relationships quickly and maintained a professionalism
  and compassion for our families that identified her as a true asset to our organization. We wish her all the best in her future endevours.


                                                                                                                                                  7
HSC Chapters Raise Community Awareness
By Wayne Greenway, Manager, Chapter                available through the Spa and HSC volunteers.       Chapter. Katie Geale and Leah Skinner are
Development                                        This event set around the Mother’s Day theme        currently cycling across Canada and have said
The Huntington Society of Canada Chap-             garnered widespread media attention raising         that HD funds they raise in “Going for a Cure
ters and Area Representatives have always          awareness about HD and HSC. “It was a ‘win-         and Nature” will be contributed to he HSC
received strong support from their local           win’ situation” says Hendriks.                      London Chapter.
communities; hundreds of merchants, orga-          In Ottawa, the local chapter of The Daugh-          Doreen Marks, an Area Representative in
nizations and individuals provide prizes and       ters of Penelope who have been supporting           Kelowna, BC has had tremendous success in
sponsor events each year. This year more           the needs of communities in North America           approaching service clubs, raising over $10,000.
HSC Chapters and Area Representatives              since they were founded in 1927, organized          last year .“I work on my own in my community,
than ever, are partnering with service clubs,      the spectacular Compassion with Fashion             as an HSC area representative, and service
athletic organizations, church groups and          show which raised over $20,000 for HSC last         clubs have been wonderful to us”, she says.
others to organize events. Other Chapters          year. “It was an opportunity to raise the level
                                                                                                       HSC Peterborough Chapter have made numer-
have become the recipients of funds from an        of awareness about HD and HSC in a whole
                                                                                                       ous presentations to service clubs and commu-
event organized by a community club or group.      new sector of the community. We also had the
                                                                                                       nity groups in their first year of operation. “The
Some of these generous gifts have come to          privilege of learning from an organization who
                                                                                                       clubs and groups have helped us in so many
the Chapters because of increased public           are truly experts in event management” says
                                                                                                       ways, and it was an excellent way to spread
awareness or through families living with HD.      Ray Bailey President HSC Ottawa. “The event
                                                                                                       awareness and to get the help we needed in
Several chapters are initiating new outreach       created more media attention around an event
                                                                                                       starting up our chapter” says June Wanamaker,
strategies to engage service clubs in helping      than the chapter has ever had in its history ”.
                                                                                                       Chapter Co-president.
to raise awareness across their community.
                                                    HSC London Chapter was delighted to receive
                                                                                                       Similar efforts aimed at reaching out to others
“Many service clubs had been unaware of             support from the Exeter Knights of Columbus
                                                                                                       in the community are underway in Saskatoon,
 HD or HSC until we made our presentations,         who organized the First Annual Knights of
                                                                                                       Ottawa, and Sault Ste Marie. Reaching out to
 and since hearing our compelling story they        Columbus Walk for HD. “We are so happy to
                                                                                                       others in the community ensures that two im-
 are now asking how they can help!” says            receive their assistance”, says Dianne Skika-
                                                                                                       portant things happen. Firstly, community orga-
 Heath Sterling, HSC Toronto Chapter Acting         vich, HSC London Chapter Executive Member.
                                                                                                       nizations (service clubs, student associations,
 President. “Their members have experience         “Many of our volunteers have family members
                                                                                                       sporting organizations and others) becomes
 running events which is an excellent resource      who are very ill and require a lot of support. I
                                                                                                       mobilized to help the broader community to
 if they are willing to work with us” says Ellen    am hoping that more organizations like the
                                                                                                       become aware of HSC’s critical role in support-
 Foster from the HSC Toronto Chapter. “And          Exeter Knights of Columbus will help us in the
                                                                                                       ing families living with HD and partnering with
 it is a valuable way to raise awareness with       same kind of way. It helps us to keep up our
                                                                                                       international leaders in research to find a cure.
 people who have a wide range of contacts in        fight against HD”, continues Skikavich.
                                                                                                       Secondly, they become tremendous assets in
 the community” continues Foster.
                                                   Other are following the lead of the Knights         making HSC Chapter events and projects a
The HSC Southern Alberta Chapter has               of Columbus in support of the HSC London            wonderful success.
partnered with the Rotary Club of Calgary
Olympic for over fifteen years in organizing
the Rotary Olympic Achieve Black and White
Gala. “We are indebted to Rotary Club Calgary
Olympic for helping us to make this event
                                                      Niagara Falls
such a success. In working together on the
event, Rotarians came to understand more
                                                      International
about the disease and they were impressed             Marathon:
by HSC’s work with families, its research
strategies, and overall leadership”, says Jacob       October 28th 2007!
Hendriks, HSC Calgary Chapter President.
They wanted to do more for our families and           Niagara Chapter volunteer Judy Koczula is working hard to coordinate the Huntington
just last year the club approved a community          Society of Canada’s participation in the Niagara Falls International Marathon, which
partnership gift to sponsor the publication of        will be taking place on October 28th, 2007! This world-class event draws participants
the Caregiver’s Handbook for Advanced-Stage           from around the world, and the Huntington Society of Canada continues to be a promi-
Huntington Disease.                                   nent beneficiary of proceeds raised from this race. We’re encouraging participants who
Another idea is to partner with a local busi-         want to run, walk or wheel their way through the course to raise funds for the Society
ness in raising funds. The Southern Alberta           and our programs!
Chapter teamed up with Newbury Spa located            The Casino Niagara International Marathon is a qualifying event for the Boston Mara-
in Calgary for May Awareness Month. In                thon, and the route takes participants through sites in both Canada and the United
recognition of Huntington Disease Awareness           States – an interesting and challenging route! If you’d like more information about this
Month, Newbury Spa generously donated                 event, or would like pledge forms, contact Judy Koczula at (905) 354-5744, or to pledge
10% of all spa treatments sold during May to          participants please visit
HSC. A coupon book with more than $100 in             http://www.sporg.com/pom/registration?cmd=event_info&event_id=83061
discounts on Newbury Spa treatments is also

 8
Update from Health Canada
                                                                                                       Huntington Society
New Substances Notification                                                                            Retail Loyalty
Regulation for Organisms (NSNR(O))                                                                     Programs
                                                                                                       Did you know you could help raise funds
In the Spring of 2006, Health Canada pro-          HSC has been in contact with a representa-          for the Huntington Society of Canada
posed changing the “New Substances Notifi-         tive from Health Canada, who has reported           (HSC) in your everyday shopping? HSC
cation Regulation for Organisms (NSNR(O))”.        there was an overwhelming response to               is involved in loyalty programs across
These proposed regulations would have              the proposed changes. They are currently            the country; please see the list below for
changed the importation of live organisms          reviewing the comments and are revising the         ways you can get involved.
(e.g. mice) and potentially hindered the vital     proposed changes to take into consideration
HD research currently being conducted in           the information provided by HSC and other           Husky / Mohawk:
Canada. In The Know profiled this informa-         organizations. Once this has been reviewed          Simply swipe HSC’s card when you fuel
tion in July 2006 and asked that those in the      they will come back to the primary stake-           up or shop at Husky and Mohawk. The
HD community to write to show their dissat-        holders for comment. HSC will continue              Society will receive 2% of all purchases,
isfaction with these proposed changes.             to keep you aware of any updates as they            including fuel and convenience store
                                                   become available.                                   items.

                                                                                                       Air Miles: 8007 91 8083

Proposed Federal Government                                                                            Use the HSC Air Miles card or ac-
                                                                                                       count number when you shop at any

Changes to the Registered Disability                                                                   participating retailers. The Society will
                                                                                                       accumulate the Air Miles points to be
                                                                                                       used for airfare and/or items needed for
Saving Plan                                                                                            our many events.
This proposal is in response to the March          they met the criteria for the Disability Tax        Calgary Co-op: 77292
2007 Budget, in particular the Registered          Credit, i.e.: disabled to a point where it is un-   Use the HSC’s Co-op membership to
Disability Saving Plan                             likely that they would be able to work. Once        purchase groceries, prescriptions, liquor
                                                   an individual is no longer able to be gainfully     and travel. The Society will receive cash
Registered Disability Savings Plan (RDSP)          employed, their un-funded health care costs         back as a patronage return at the end of
In the March 1007 budget, the Finance Min-         increase, and there is a potential reliance on      the year.
ster, Hon. Jim Flaherty, proposed the estab-       other forms of government assistance. At this
lishment of the Registered Disability Savings      point in their lives it is not likely that they     Shoppers Optimum Points
Plan (RDSP). In this plan individuals, parents     will be able to save and garner the benefits of     You, your friends and family can now
and grandparents would be able to save for a       this program.                                       donate Shoppers Optimum points to the
person (i.e. child, children) with a disability.                                                       Huntington Society of Canada. You select
This plan will enable people to save tax-free      The Huntington Society of Canada proposes
                                                   that the eligibility for the Registered Dis-        how many points you’d like to transfer.
until withdrawal (similar to an Registered                                                             The Society will redeem the points for
Education Savings Plan). There are two crite-      ability Savings Plan be amended, allowing
                                                   for individuals with Huntington disease to          things needed to run our many events
ria for this program: they must be eligible for                                                        and activities.
the “Disability Tax Credit” and be a Canadian      save for their future. Amending eligibility for
resident or parent or legal representative of      the RDSP to include those individuals with a        Obtaining a Shoppers Optimum card is
a person who is resident in Canada. This is        diagnosis of HD or those who have undergone         free and the application can be com-
an opportunity for parents, or grandparents,       predictive testing and have been determined         pleted in minutes at any Shoppers Drug
with profoundly disabled children, grandchil-      to be gene positive, will allow them to plan        Mart. Points are earned when you make
dren to save for future costs of home care,        for their future during their most productive       purchases:
health care, etc.                                  employment years, before the symptoms of
                                                                                                       • At Shoppers Drug Mart stores
                                                   HD make working no longer possible.
An opportunity like the RDSP would enable                                                              • At Shoppers Home Health Care stores
individuals with progressive, genetically          Don Lamont, on behalf of the Huntington
                                                   Society of Canada, has sent background              • On your CIBC Shoppers Optimum Visa
inherited diseases, such as Huntington
                                                   information and a letter to the Minister of           card.
disease, to plan and prepare for their future.
The Huntington Society of Canada has               Finance outlining our position on this pro-         To donate points, log on to your account
worked with many families who struggle with        posed change. It will also be important for         on the Shoppers Optimum website
the burden of the un-funded costs of support-      Chapters and individuals who are connected          https://www.shoppersoptimum.ca/Op-
ing individuals with HD in the community,          with the HD community to also let their             timumTransfer/en_CA/charity.do and
such as nutrition supplements, respite care,       voice be heard. The HSC website has a letter        select the Huntington Society of Canada
transportation, equipment needs, and a host        which you can print and send to the Hon. Jim        from the National charities list.
of other related costs.                            Flaherty letting him know your position, and
                                                   agreement with the proposal stated above.           For all the above cards or for more infor-
The current eligibility for RDSP means indi-       The letter can be found at                          mation, please contact: Julie Martini at
viduals with HD would not be eligible until        www.huntingtonsociety.ca                            curehd@shaw.ca or (403) 860-6277.


                                                                                                                                                   9
DEAR HSC…
                                                 particular idea or interest that he/she will      In order for any researcher to get approval
                                                 investigate without a particular application in   to do research, they must adhere to ethical
                                                 mind. This type of research can be very valu-     standards that are set out internationally.
I have heard a lot about clinical trials and     able to improving knowledge about diseases        In Canada, the federal government sets the
research and I think that I might like to        or chemical responses, for example.               minimum standard in the Tri-Council Policy
participate. What do I need to know before I                                                       Statement: Ethical Conduct for Research
                                                 Applied research is when a researcher has a
can do this?                                                                                       Involving Humans (http://www.pre.ethics.
                                                 particular application for the information that
                                                                                                   gc.ca/english/policystatement/policystate-
Anne in Saskatoon                                will be learned from the investigation. Clini-
                                                                                                   ment.cfm). In this statement it outlines the
                                                 cal research or trials are a common form
Dear Anne,                                                                                         principles that researchers must build into
                                                 of research in Huntington disease. In these
                                                                                                   the research application:
Research into Huntington disease is vital        studies, volunteers are involved in assist-
to the development of effective treatments       ing investigators to verify clinical process,     • Respect for human dignity
and a cure for this debilitating disease. The    medications, procedure, etc.                      • Respect for free and informed consent
Huntington Society of Canada is aware of the     Many different types of people can partici-       • Respect for vulnerable persons
importance of research and has as part of its    pate in research: those with HD, those at
mission to “further research to slow and pre-                                                      • Respect for privacy and confidentiality
                                                 risk, and families. This will depend on the
vent Huntington disease”. We do this through     type of research that is being conducted at       • Respect for justice and inclusiveness
the funding and support of key individuals       any given time, by each researcher. Essen-        • Balancing harm and benefits
who are doing work in the HD field, as well      tially, not every person is appropriate for       • Minimizing harm
as working jointly with other groups, such as    every research study. There are often spe-
the Huntington Study Group and HighQ.                                                              • Maximizing benefit
                                                 cific criteria that you will need to meet: age,
                                                 gender, risk status, etc. Just because you        Essentially, these principles when put into
Before you consider participating in research
                                                 may not be a candidate for one study, it does     practice will mean that the research that
there are a number of things for you to think
                                                 not mean that you will not be appropriate for     you are participating in will treat you with
about:
                                                 other studies. Because research can happen        respect, keep you aware of all important
• Why do I want to participate in research?                                                        information so that you can decide if you
                                                 in many different ways, interviews, analysis
• What types of research will be conducted?      of blood and other specimens, taking a new        want to join, keep all information about you
                                                 drug or trying a new method of treatment,         private and confidential, it will be fair and
• How do I contact those who are doing
                                                 each research study will be different. For        include a variety of people (gender, ethnicity,
  research?
                                                 example, in Canada there are researchers          etc. where appropriate), the risks that you
• How do they take care of my best interests                                                       will be exposed to will be minimized, and
  and minimize risk to my family and me?         who are looking at:
                                                                                                   that there will be the most benefit possible.
• Once I start participating how long do I       • Effects of Coenzyme Q10,                        While there still may be some risk, you will
  have to continue?                              • The PHAROS Project looking at the natural       be informed of this and will be able to make
Lets look at these questions one at a time.        history and experience of those at risk who     your personal decision with the information
                                                   do not know their status; and                   that the researchers provide to you.
Choosing to Participate
                                                 • COHORT a long term observational study          To ensure that these responsibilities are
At the 2006 HSC Conference, we conducted           of those with HD.                               followed, each investigator must include
a survey to ask people about their views of                                                        approval from an “Office of Research Ethics”,
research and why they did, and did not par-      Who is doing HD research in Canada?
                                                                                                   with the institution that they are connected
ticipate. The results of this survey showed      Trials are untaken with informed and
                                                                                                   with, e.g.: university, hospital, etc. Those that
that for those who participate in research the   consenting volunteers, and are conducted
                                                                                                   are funding the research also require that the
main reason they do so is that it is important   according to conducted procedures. The
                                                                                                   research be followed ethically.
to them that they be a part of finding a cure.   evaluation and results are closely and care-
As well, they have an interest in research       fully monitored There are many research-          Clinical Trials in Canada
and knowing more about HD. For those who         ers who are doing investigations in Canada,       Additionally, there are special precautions
did not participate the main reason was that     which may or may not be appropriate for           that are taken when researchers conduct
they were afraid and did not know much           you. If you are interested in participating in    clinical trials with drugs in Canada. In
about the research process and how they          clinical research, talk with the Huntington       Canada, drugs are authorized for sale once
could help.                                      Society of Canada National office or a local      they have successfully gone through an
                                                 Resource Centre Director, or member of your       extensive drug review process. This process
For each person who participates in research
                                                 care team (genetics, neurology, psychiatry,       falls under the mandate of Heath Canada’s
it is an important personal decision, but one
                                                 social work) to see if there is some way that     Health Products and Food Branch (HPFB).
that should be based on accurate informa-
                                                 you can participate.                              This branch is responsible for the approval
tion. This freedom of choice is built into how
researchers conduct their work, and you          Protecting Research Participants                  process for pharmaceutical drugs, vitamins,
should never be pressured to participate, and                                                      vaccines and medical devices from pre-
                                                 Before any research can be conducted it
always feel free to ask questions.                                                                 clinical trials to post market surveillance,
                                                 must meet specific guidelines that ensure
                                                                                                   inspection and investigation. Throughout the
Types of Research                                that individuals who participate in the re-
                                                                                                   process, the safety and well being of Canadi-
                                                 search studies have all the information about
Research is generally divided in to two                                                            ans is the paramount concern.
                                                 the study, the risks and benefits to them, and
categories: basic and applied research.
                                                 have provided their consent.                                                  continued on page 11
Basic research is when a researcher has a


10
continued from page 10

The intent of a clinical trial is to research and
gather information on drug’s dose, effectiveness
                                                                     My Story: Profiling Life with HD
and safety in humans. Trials are undertaken                   Please let me introduce myself. My name is Alice, and I am a wife and
with informed and consenting human subjects                   working mother in her mid-thirties with two adolescent children. I am your
according to good clinical practices and ethical              average wife and mother, like any you would find in your community, or
guidelines. This provides a controlled environment            across Canada. However, I potentially have something in my genes that sets
where the procedures for drug administration and              me apart from the general public. My genes may contain a mutation that
the evaluation of the results are closely monitored.          sets me apart from you. I am at risk for Huntington disease.
Essentially, the government, offices of research              Huntington disease is a fatal neurodegenerative disorder. It progressively
ethics, and researchers themselves work very hard             destroys both mind and body, eventually taking away the ability to speak,
to protect the people who volunteer to participate            walk, and even eat without help. My father has the HD gene, which means
in research. Everything is done to protect the                that I have a 50% chance of inheriting the same fate.
people who volunteer to participate in research.
The well being of individual is considered para-              I have not undergone genetic testing, so I do not know whether I have the
mount. In the unlikely event of an adverse reaction,          gene, but I live with the knowledge that I may be one of the 1 in 10,000
or if a concern is expressed, the participant can             Canadians with the disease. However, I already am one of the 1,000 whose
withdraw at any time. Should there be any adverse             lives are touched by HD, as not only does my father have the disease, but I
effects of participation the research can be stopped          am also his caregiver.
immediately. As well, if at any time and individual
                                                              My father is currently in the mid-stages of the disease and lives with my
decided that they can no longer participate, they
                                                              family and I so that I can care for him. He leads a very full life, and is
can voluntarily withdraw.
                                                              managing his symptoms well.
Your Choice
                                                              Ever since my father was diagnosed with HD, I have been active with the
Each research study is designated to continue for             local Chapter of the Huntington Society of Canada (HSC). I currently sit on
different amounts of time: long (up to years) or              the Chapter Executive and I work hard with other local volunteers to raise
short (days). You can withdraw from research stud-            awareness and funds for this little known disease. It is a lot of work, but I am
ies at any time as your life circumstances change.
                                                              dedicated to creating local awareness and raising funds to find a cure and
People who have participated in research in the
                                                              support families with HD.
past say only you can decide if this is the right de-
cision for you, but the value that you may be adding          I have given you my basic background information, but in coming issues
to the knowledge of HD can be invaluable.                     of Horizon I will be letting you know more about me and the different parts
For more information about HD Research that may               of my life related to HD. You will get insight into my life as a caregiver, as a
be occurring in your area please contact your pro-            person at risk, as a volunteer and chapter member. You will learn all aspects
vincial Resource Centre Director or local Individual          of my life and how HD plays a part in each one.
and Family Services Worker or National Office at              I look forward to sharing with you in the coming issues!
1-800-988-7398.




                                                                Dealing out a Future…
                                                                    Huntington Society of Canada presents

           Place your bets and ante up.
             We hope to deal you in.
                                                            Casino Royale
                                                                  Saturday, November 24, 2007
                                                            at the Liberty Grand, 25 British Columbia Road, Toronto

                                                  Finding a cure is no game, but funding a cure is…
                                                              Poker • Roulette • Blackjack • Craps • Play Money

                                                              Tickets $125 each
                                                   To purchase tickets or sponsor this event:
                                                        contact Jerry Lawlor at 1-800-998-7398 ext. 26
                                                               or jlawlor@huntingtonsociety.ca



                                                                                                                                                 11
A cure is Blooming...
Last year Amaryllis sales raised over              • Set up outside of your local grocery store.      suggestions include: put an add on Face-
$110,000 for research and since 1985 when            Be sure to obtain the store’s permission         book, talk about them in chat rooms, or set
the Huntington Society began selling Ama-            first.                                           up a website where people can get infor-
ryllis, we have raised $1.3 million! These                                                            mation and see the flowers they purchase
                                                   • Keep a case of them in your car. Wherever
beautiful, bright orange plants have become a                                                         from you. Be sure to use caution, however,
                                                     you are, they are available for sale. Talk
symbol of hope for many living with HD.                                                               when dealing with strangers.
                                                     about the bulbs to people at your destina-
Every year we try to increase our sales of the       tion.                                          • Talk to your Employer or Friends with
plant to be able to raise more money to fight                                                         businesses about purchasing cases to use
                                                   • Take a couple cases to work. Co-workers
HD. This year, due to the rising cost of the                                                          for employee gifts or for client apprecia-
                                                     will love the convenience of being able to
plant, we needed to order a greater quantity                                                          tion.
                                                     obtain a gift without leaving work. They
to ensure that 1/2 the cost of the sales still
                                                     may also want plants to brighten up their      With your help, we will raise more money
goes to research. But, now we need to sell
                                                     workspace.                                     than ever before in the fight against HD. A
more than ever before. We need your help to
                                                                                                    cure could be one plant sale away! If you
meet this goal.                                    • Word of Mouth – Talk about the kits and
                                                                                                    have tips for selling you would like to share,
                                                     the cause to friends and family.
If you haven’t sold Amaryllis before, give                                                          please send me an email at ebonkink@
it a try. The vibrant plants practically sell      • Take them to church. Advertise in the          huntingtonsociety.ca.
themselves. Or buy a case and use them for           Church bulletin or leave brochures in the
                                                                                                    Amaryllis sells for $12/kit (includes bulb, pot,
hostess gifts, employee gifts, or simply give        vestibule, or take them with you to prayer
                                                                                                    and soil in an attractive box). There are 12
them away to friends and family!                     groups or bible study.
                                                                                                    in kits in a case. For every kit sold $6 goes
If you are a current seller, please consider       • Students: ask if you can set up a display      to research for a cure. No matter where you
adding an additional case to your order. Here        at your school, college, or university. Post   live in the country, we can courier a case to
are some great suggests from other sellers:          notices on community bulletin boards, in       you to sell. Delivery dates are available from
                                                     the school paper, and leave brochures in       September to December. Contact National
• Door to door approach- leave pamphlets
                                                     the cafeteria.                                 office at 1-800-998-7398 or
  in mailboxes around your neighbourhood
                                                   • Go high tech – send an email to all your       info@huntingtonsociety.ca to order your case
  with your name and telephone number on
                                                     family and friends telling them about the      of Amaryllis or to increase your order.
  them, sell to people interested. It is a great
  way to meet your neighbours!                       cause how their purchase can help. Other



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

				
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