HSC Launches New Website

I N S I D ENew HSC Brand ..................................... 2

Reach for the Summit in 2007-2008 ......................................... 3

Research Update .................................... 4

HSC Chapters Raise Community Awareness .......................... 8

Dear HSC .............................................10

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 endAside from showcasing the new HSC brand the new website is very user-friendly and easy to navigate. An important feature, aside from the ease of navigation, for web-site visitors is the user-friendly interface on the back end of the site. This is a great feature for chapters interested in having or

starting a chapter website as you don’t need to know HTML or have technical knowledge.

Dynamic mapAn interactive map of the entire country is on the site with colour coded contact informa-tion making it easy to find needed services across the country.

Calendar of eventsDisplays events happening across the coun-try in a weekly or monthly format.

SearchThis capability is available on every page making it easy to find what you are looking for.

Member log-inHelp to target information while also allow-ing HSC to communicate with its desired audience.

Volunteer websitesA great feature for all Chapter across the country. As already noted above the websites are easy to manage. The volunteer websites are hosted directly off the HSC National page and use the same branding ensuring a consistent image and link to National, while also allowing for a focus on local Chapter information.

Message boardsA great feature that will bring together the HD community and allow discussion on all HD topics.

HTML email newslettersThe ability to sign up to receive email news-letters and select your topics of interest, so we are able to target your interests and get you more timely communications.

continued on page 2

No. 123 Fall 2007

ISSN 0827-7605

Horizon is the newsletter of the Huntington Society of Canada. Published three times per year (Spring, Fall and Winter), its purpose is to convey information to individuals with Huntington disease and their families, health care professionals, friends and supporters.

Huntington disease is a hereditary brain 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 of the disease. As yet, there is no cure.

The Huntington Society of Canada is a national non-profit charitable organization founded in 1973 to help individuals with Huntington disease and their families.

Editor: Katie Reid Associate Editor: Edward Bird Distribution: Shirley Barnes

Layout: Real World Graphic Design

Horizon welcomes your comments, ideas and suggestions for future articles. Please contact:

Huntington Society of Canada 151 Frederick St., Suite 400

Kitchener, ON N2H 2M2

Tel: (519) 749-7063 • Fax: (519) 749-8965 Email: info@huntingtonsociety.ca

Web site: www.huntingtonsociety.ca

Charitable Registration #: 11896 5516 RR0001

The Huntington Society of Canada’s NAVIGATOR research program is supported by the following funds:Benefactor: Sun Life Financial

Leadership Partners: AGF Group of Funds; George Weston Ltd.; The Joseph S. Stauffer Company; TELUS Community Connections

Family Fund Partners: Barrett Research Fund; Bloom Family Fund; The Kelly Bum-stead Family Fund ; Chaplin Family Fund; Cranston-Dorr Family Fund; Annie J. Cutler Memorial Fund; Janice Johnson Family Fund; Sylvia Hickson Family Fund; Irwin Family Fund; Kidd Family Fund; McArthur Family Fund in memory of Megan McArthur; Skene/Stevens Family Fund; Skeoch Family Fund; Sterling Family Fund; Wiswell Fam-ily Fund; Wright Family Fund in memory of Helen-Mary Wright

New Brand for the Huntington SocietyBy Katie Reid, Communications Officer

The Huntington Society of Canada has got-ten a makeover! You will have noticed that this issue of Horizon has a new look. As announced in the last issue, the Huntington Society of Canada (HSC) has unveiled a new brand that will be appearing on all its materi-als.

The new brand was launched this past May and you may have already seen the new look on various materials from the Society, includ-ing letterhead, publications, event materials and our new website (see page 1).

A brand is a collection of images and ideas 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-ments produced by our organization such as letterhead, envelopes, booklets, our website and newsletters such as this one.

Utilizing a common theme in our marketing materials provides continuity. The brand

seeks to increase the product’s perceived value to the customer and thereby increase brand credibility and brand awareness. When staff, volunteers, donors, clients et al. see continuity in a brand, the brand becomes more valued and credible in all areas of the business.

We were fortunate to work with OgilvyOne Worldwide on our rebranding. OgilvyOne, a world-renowned advertising agency worked with HSC on creating a new brand that encompassed the values of the organization and conveyed to the public an image that matched the caliber of work being done by the Society.

Video on demandAllows for a large audience to have ex-posure to educational material, which is easy to access.

Opinion pollEasily gather information from those visit-ing and using site. Allows for targeting and tailoring of information

New Online Giving Capacities This new online donation system provides multiple opportunities to give throughout the website.

• Provides a comfortable and easy system for the donor to use

• Ensures that the donor’s information is secure

• In addition to single donations and hon-our donations the site allows for new types of donations to be accepted online

Event Ticket SalesChapters and staff can sell tickets for events/activities online. This system will also be utilized to sell cases of amaryllis plants online to interested clients (this is a key fundraising initiative).

Most of the features are currently avail-able, but others will be available at a later date. The website will be constantly updated, so keep checking back for the latest HD news, and to connect with the HD community across Canada and around the world.

Our new brand encompasses a new cleaner and more modern look including a new colour scheme. We have moved from the green and magenta colour scheme to a more subdued palette of blue and beige. Along with the new colour scheme, a new image also appears throughout the branded materials. The Huntington flower found in both our old and new logo has been adapted to appear as a watermark on the side of the materials. The new colours and image are the new distinc-tive markers of HSC.

You will continue to see the new brand as we phase in all of our materials and publica-tions. We hope you enjoy our new look!

HSC Launches New Websitecontinued from page 1

2

Reach for the Summit: HSC National Events in 2007 & 2008

Do you have ideas for topics or speakers for small group presentations at the 2008 HSC National Conference?

We want to hear about them! Email Shirley Barnes at

sbarnes@huntingtonsociety.ca

By Wayne Greenway and Jo Anne Watton

For more than three decades, the Hunting-ton’s community has been united in the search for a cure for HD. When Ralph and Ariel Walker created the Huntington Society of Canada in 1973, it seemed an impossi-bly distant goal – a Mount Everest halfway around the world. Year by year, however, that target has grown from a tiny speck on the horizon to a peak directly above us, filling our frame of vision.

In 2006, we celebrated our arrival at a sym-bolic base camp, thanks to an impressive

string of accomplishments. A generous gift from the Devlin Fund for Families to bolster our Individual and Family Services program inspired our chapters and area representa-tives to raise more funds than they imagined possible.

At the same time, we’ve built a stronger team than ever, thanks to initiatives such as regional training sessions across Canada. Most importantly, our work over the years is paying off with research breakthroughs like the prevention of HD in mice announced last year.

Now we’re poised to begin the toughest but most rewarding part of the journey – the climb from base camp to the summit. To kick it off, we’ve planned three Reach For The Summit initiatives in 2007 and 2008 that are guaranteed to leave you feeling energized and ready to tackle the challenges ahead.

Beginning the AscentThis fall we’re offering Regional Chapter De-velopment Days tailored to meet the different needs of HSC volunteers across the country, build local capacity, and foster teamwork.

In the spring, we’ll be hosting Family Days in every region of Canada using a combina-tion of local speakers and interactive video conferencing. To the best of our knowledge, it will be the first time a Canadian Charity takes advantage of technology in this way!

Finally, our Charlottetown Chapter and the HSC National Office are teaming up to create the HSC National Conference 2008 next fall – a conference that promises to be our best yet.

So sharpen your ice axes, strap on your cram-pons, and prepare to climb to some exhilarat-ing new heights in the coming year!

HSC Regional Chapter Development Days

HSC Regional Family Days

2008 HSC National Conference

Who HSC volunteers and their guests

Individuals living with HD, families, friends, caregivers, researchers, health care professionals and government decision makers

The finest minds in HD research, together with individuals living with HD, families, friends, caregivers, researchers, health care professionals, volunteers, government decision makers, and students

What Reconnect with other volunteers to learn and share from each other’s experience.

Learn new skills to strengthen your chapter in the fight against HD.

Get the latest updates on our progress as an organization.

Become more united in our climb to the summit.

Hear the most up-to-date information on Huntington disease from internationally recognized speakers.

Interact with speakers and participants in other regions using the latest in video conferencing technology.

Participate in workshops or small group discus-sions with local experts.

Strengthen your capac-ity to manage HD and broaden your support network.

Learn about the new-est developments in HD research.

Build a stronger organiza-tion ready to tackle our new goals.

Make connections and foster your professional development.

Where & When

Contact Ann Wipp for more information 1-800-998-7398

Saturday April 26, 2008 St John’s, Halifax, Calgary, Edmonton, Vancouver

Saturday June 7, 2008 Toronto, Ottawa, Sudbury, Winnipeg, Saskatoon

Thursday, October 30 to Sunday, November 2, 2008

Charlottetown, Prince Edward Island

How to Register

Contact your Chapter President or Area Representative.

Look for registration information in the next issue of Horizon.

Look for registration information in Horizon in 2008.

Join the Climb – Huntington Society of Canada’s National Events 2007 & 2008

33

to see results and therefore it is important to support the most promising, high priority, areas that will eventually lead to effective treatments. Families and donors have vari-ous interests and the Society also wants to further an integrated, and comprehensive approach to fundamental treatments over the longer term, as well as to provide immediate symptomatic relief.

From a business viewpoint, the Society also strives for consistency in its research spend-ing, and seeks to plan our expenditures on a multi-year basis. And, we feel we are doing that effectively.

Figure 1 is a diagram of HSC’s current research funding program. The diagram out-lines the key organizations in North America and their positions in the HD discovery process for basic, translational and clinical research. We discussed how this discovery process works in the Spring 2006 edition of Horizon. The HSC markers indicate the places where the Society is now investing its resources.

Under the category of basic research, which is funded by the Ralph Walker Fund, the Society continues to operate the NAVIGATOR Research Program. This program supports basic scientific research of direct and im-mediate relevance to Huntington Disease in Canada with the aim of providing a platform for the future recruitment of outstanding investigators to HD research, to facilitate research collaboration nationally and inter-nationally, and to support research that is relevant to other neurodegenerative disor-ders. To better prioritize projects, we now hold one competition per year, normally in the spring. This spring a grant was awarded to Michael Hayden’s lab at the Centre for Molecular Medicine and Therapeutics (CMMT) in Vancouver to study The Role of Huntingtin Phosphorylation (phosphate) in the Pathogenesis of HD.

In recent years the NAVIGATOR Research Program has funded various projects that have increased knowledge about HD in important areas such as phosphorylation, calcium channels, calpain inhibitors, choles-terol metabolism, the role of FEN1, defining protein-protein interactions, modulating hun-tingtin levels, transplantation of neural cells, and SiRNA. We have also helped to support key Canadian scientists such as Dr. Susan Andrew, Dr. Janice Braun, Dr. Edmond Chan, Dr. Francesca Cicchetti, Dr. Eileen Denovan-Wright, Dr. Michael Hayden, Dr. Martin Lep-age, Dr. Blair Leavitt, Dr. Geraldine MacGib-

Research UpdateBy Don Lamont, CEO and Executive Director

The Huntington Society of Canada (HSC) aspires to a world free from Huntington disease. The Society strives to:

• Maximize the quality of life of people living with HD by delivering services;

• Enable others to understand the disease;

• Further research to slow and to prevent HD.

With this mission, research is certainly in-tegral to the work of the Society. HSC began as a grass roots movement back in the early 1970’s with a strong orientation to services and helping families and therefore we built our Individual and Family Service (IFS) programs first. Many other national health charities began with a focus on research and developed more services over the years. With funding for our IFS programs now in place (thanks in large part to the generosity of our donors) HSC is working hard to increase its collective contribution to research, first by directing more resources to research and second by striving to heighten its impact.

Last winter HSC announced certain changes to its research program and this article provides a progress report. First, I will speak to the basic principles underlying HSC’s ap-proach to research. Second, I will explain our current activities.

The coordinated, international campaign to slow and eventually prevent HD is truly an exemplary model for others to follow. Canadians have been leaders in this process for many years and the Society aims to carry on that tradition. There are no borders to HD and every organization in the international movement must work together as one for the greater good. It’s also important for every participating organization to be very focused, to play to their strengths and to find their own unique niche or role. HSC’s research strategy must overlay or complement the international campaign and we should find ways to leverage our contribution to make the entire process better. In other words, a key tenant of HSC’s approach is to partner with world-class organizations to make use of their resources and expertise to help to influence the direction of HD research in Canada and abroad.

The Society has a responsibility to continue to attract and retain Canadian research scientists to contribute to the international effort and also an obligation to support the best science in the world wherever it takes place. HSC invests in HD research on behalf of Canadian donors. We know donors want

bon, Dr. Ray Truant, Dr. Simonetta Sipione, and Dr. Samuel Weiss.

Our Research Council, which oversees the NAVIGATOR program, is world-class and includes:

Dr. Harold Robertson Dr. Lynn Raymond Dr. Gillian Bates Dr. Eileen Denovan-Wright Dr. Michael Hayden Dr. Ray Truant Dr. Marcy MacDonald

Harold Robertson has provided wonderful leadership over the years. Ray Truant has been been nominated to fill the position of Chair of the Research Council. Last sum-mer we received good news about how Dr. Hayden’s lab had stopped HD in a mouse, and this summer Ray published an important paper adding new insights about how HD is triggered and offering a new drug target.

This spring, HSC signed an agreement with the Canadian Institure of Health Research (CIHR), the federal government’s research funding arm, to promote Huntington disease research in Canada, and to attract and keep scientists in the field and foster excellence. HSC will fund one or more Pre-Doctoral Fellowship Awards, one or more Doctoral Research Awards and will contribute to the top ranked Huntington disease researcher in the national competition. Scientists interest-ed in these opportunities can apply through the CIHR competitions, described on the CIHR website (www.cihr.ca), which are now underway. Through this agreement the Soci-ety takes advantage of CIHR’s grant review process to attract candidates and rank appli-cations, and adds support for newly trained doctors to leverage the investments already made in these scientists – both to keep them in the HD field and to generate important re-search. The agreement also provides a base from which HSC can develop a relationship with CIHR to expand the understanding of and the support for, HD research in Canada.

In August, HSC representatives attended an important meeting, in New York held by the High Q Foundation, of scientists and organi-zations who fund neurological research. HSC is now exploring new opportunities to coordi-nate funding for HD research. Working within a larger community, the Society is excited about the potential to fund the most promis-ing, high priority research projects anywhere in the world and/or develop new ideas or tools which enable the research community generally to gain more traction.

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Basic From Finding Needles in a Haystack to Sorting Needles

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

Translational

CIHR

HSC

High Q Fdn & othersCHDI (Biotech Co*)

NAVIGATOR

HSC HSC

Select Research - Create Tools

*Accessible databaseabout findings bytopic; common mousemodel; bringresearchers and drugcompanies together tocollaborate; develop

www.huntingtonsociety.ca

HuntingtonProject(Databank)Clinical

Families

Unique Projects

Huntington Study Group

HSC

sites

HSC

collaborate; developbiomarkers tomeasure diseaseprogression;consistent compoundsfor use inexperiments, establishpriorities for basic andpre clinical research,open IP policy,commission work, etc.

Futhermore HSC and the Huntington Study Group (HSG) are interested in developing therapies in the near future that offer relief to individuals living with Huntington disease today, while essential basic science and translational research proceed to develop therapies that will treat/ modify the underly-ing disease. We know family members deeply appreciate the vital work being done to fur-ther the basic science essential to unlocking meaningful treatments. While we are getting closer to these treatments, the timeline is still uncertain. Families naturally want help today. Working in partnership with the HSG, using funds raised through the Laura’s Hope Fund for clinical research, HSC recently put out a request for one or two proposals from scientists in North America, Australia and Europe to test experimental treatments in humans that show promise of providing demonstrable symptomatic benefit for the cognitive (intellectual), motor, behavioral or weight maintenance problems facing patients

with manifest HD. These projects should be completed by December 2008 and it is hoped they will provoke interest among commercial companies to further develop symptomatic treatments for HD .

This is the second unique project jointly sponsored with the HSG. We are also co-funding a single site clinical trial at the Oregon Health and Science University in Portland to evaluate Tauroursodeoxycholic Acid, an antiapoptotic agent (dealing with programmed cell death).

Aside from straightforward medical re-search, a complimentary relationship exists between Individual and Family Services and medical research. A key link between the two lies with the connection between preclinical research registries and introducing families to clinical trials. The opportunity to partici-pate in a clinical trial is an important part of the continuum of care for any person living with HD. Ensuring that there are sufficient

numbers of individuals available to partici-pate in clinical trials is an essential compo-nent of any discovery process. Therefore, HSC is interested in encouraging qualified sites in various parts of the country to con-sider joining the HSG program. Canadians already are substantial contributors to HSG studies, but wouldn’t it be great if we became the international pace setter?

Altogether, the Huntington Society of Canada is moving forward with a comprehensive research strategy built upon our unique strengths, in collaboration with the world-wide campaign. We will continue to adjust and refine this program as conditions evolve.

These are exciting times for HD research and the Society is providing Canadian research-ers, families and donors with key opportuni-ties to become part of the solution. Please join us to create a world free of Huntington disease!

Figure 1

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Huntington Disease Clinics in CanadaBy Jo Anne Watton, Director of Individual and Family Services

The Huntington Society of Canada (HSC) has been actively working in and developing clinics that support individuals and families who are affected by Huntington disease (HD). There are clinics currently operating in North York, North Bay, and Sudbury, in Ontario, Calgary and Edmonton in Alberta and Vancouver, BC. In addition to these clin-ics, the Halifax area has been able to secure funding and support for the development of a HD clinic.

Research has shown that a multidisciplinary clinic is one of the most effective ways of treating and supporting those with HD. HSC is actively working with chapters, and indi-viduals in local communities, such as Ottawa where there is currently no such care, to develop innovative approaches to multi-disci-plinary care for those affected by Huntington disease.

Following is short profiles and summaries of the multi-disciplinary clinics that are cur-rently operating across Canada. For more in-formation about these clinics, please contact your local HSC Resource Centre Director.

Vancouver, British ColumbiaBy Susan Tolley, BC Huntington Disease Resource Centre Director

The Huntington Disease Medical Clinic serves the entire province of British Colum-bia. BC alone has a population of 4 million, and families even travel to the clinic from the Yukon Territory, which has a popula-tion of 31,000. There are approximately 650 HD –families on the clinic records, but that number is increasing by at least 20 new HD families per year. Additionally, referrals are received from the states of Washington and Alaska, and periodically patients come from other provinces in Canada.

Predating the HD Medical Clinic in its pres-ent form, Dr. Michael Hayden established a predictive testing centre in 1986. Within this clinic, as well as giving predictive test results, he also diagnosed many patients with HD and followed these patients on an annual basis. During this time, the University of British Columbia (UBC) also served as the site of a major clinical trial for symptomatic persons with HD, testing the efficacy of lamotrigine. Overwhelmed by the need for medical management for his patients, Dr. Hayden assembled a team in September 1996 in order to provide the best care pos-

sible for individuals affected with HD and their families. Since then a multidisciplinary team has been meeting regularly.

The multidisciplinary team includes Dr. Michael Hayden (geneticist), Dr. Lynn Ray-mond and Dr. Blair Leavitt (neurologists), Dr. A.D.Goumeniuok (psychiatrist), Susan Tolley (Director HSC BC HD Resource Centre), Susan Creighton (genetic counsellor), and Joji Decolongon and Allison Coleman (clinical research coordinators). The patient meets with members of the team; in turn the team help the family physician arrive at the best care possible for the patient with HD. In ad-dition, the clinic serves to assess patients for entry in clinical trials.

When a patient requires other special-ist help, referrals are made to the health authority programs where the person lives, or where communities do not have this specialized coverage. As well, patients can be referred to another provincial outpatient program at the GF Strong Rehab Centre. The centre has a Neuromusculoskeletal Program whose core team includes a dietician, oc-cupational therapist, physiotherapist, and speech language pathologist.

The Department of Medical Genetics is located at UBC Hospital, at the University of British Columbia. They can be reached at (604) 822-7738. For more information please contact the BC Huntington Disease Resource Centre at (604) 822-7195 or stolley@huntingtonsociety.ca.

Edmonton, ABBy Sally Vincent, Northern Alberta Hunting-ton Disease Resource Centre Director

The Movement Disorder Clinic is located at the Glenrose Hospital in Edmonton, Alberta and provides assessment, diagnosis and treatment for individuals with HD in North-ern Alberta.

The clinic has worked with clients with HD since 1990. Clients are referred through a family doctor or specialist. Dr. Wayne Martin is the clinical lead in the clinic, along with Research Assistant, Marguerite Wieler, and Clinical Research Nurse, Pam King. In addition to seeing clients at the Edmonton location, Dr. Martin also does an onsite clinic in Camrose every 4 to 6 months and has provided this service since 2003.

The Movement Disorder Clinic is actively in-volved in Huntington Study Group initiatives, which as mentioned above conduct clinical trials. Presently, the Movement Disorder

Clinic is conducting two research studies: PHAROS and Predict HD (for more informa-tion on the clinical trials please visit www.huntingtonstudygroup.com.

Clients are provided with ongoing support and are referred to the Northern Alberta Resource Centre who assist those individuals and their families.

For more information please contact the Northern Alberta Huntington Disease Resource Centre at (780) 434-3229 or svincent@huntingtonsociety.ca.

Calgary, ABBy Loretta Young, Southern Alberta Hunting-ton Disease Resource Centre Director

The Calgary Huntington Disease Clinic was established as part of the Movement Disorders Clinic 23 years ago at the Health Sciences Centre (Foothills Hospital) through the work of a Neurogeneticist, Nurse and Psychiatrist, all of whom are still working with the clinic.

While the clinic is multidisciplinary some services are located at other local facilities such as the presymptomatic testing clinic, which is located at the Alberta Children’s Hospital.

The following professions currently par-ticipate in the HD clinics: Neurogeneticists, Neurologists, Nurses, Clinical Research Nurses, and Psychiatrists. Referrals are made to other departments/professions when necessary such as Neuropsychology, Speech/Language Pathology, Swallowing Clinic, Diagnostic Imaging, Homecare/Com-munity Access, and the Southern Alberta HD Resource Centre.

Some of the members of the clinic team are active participants in the local HSC Calgary Chapter cementing the relationship between the two groups. The Psychiatrist and/or Neu-rogeneticist will speak at Information/Sup-port meetings as requested, or offer group sessions, together with the Resource Centre Director, to groups of those affected by HD, such as couples, and caregivers/care-part-ners. Additionally, a multidisciplinary clinic is also offered twice a year at the Carewest Dr. Vernon Fanning Centre for residents of that centre.

The Calgary Clinic is an active participant of the Huntington Study Group and as a result individuals from Alberta, parts of Saskatch-ewan and British Columbia can have access to all studies. Mary Lou Nicholson Klimek is the Site Coordinator for all HD Research.

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To participate in clinical trails or research, individuals simply need to express an interest by approaching Mary Lou, or Genetic Counsellor Linda MacLaren or the Resource Centre Director. The Southern Alberta Huntington Disease Resource Centre can be reached at (403) 284-5651 or lyoung@huntingtonsociety.ca.

Winnipeg, MBBy Sandra Funk, Manitoba Huntington Dis-ease Resource Centre Director

The Movement Disorder Clinic in Winnipeg has been in operation since September 2006. It has been established to provide a multi-disciplinary approach to the care of those affected by Parkinson’s disease, Huntington disease, Dystonia and other movement disorders. The Manitoba Huntington Disease Resource Centre has recently relocated its office into the clinic. We are very pleased to be invited into this partnership.

The clinic team includes two movement disorder neurologists; Dr. Douglas Hobson and Dr. Andrew Borys. The rest of the clinic is comprised of Shaun Hobson (Movement Disorder Nurse/Clinical Research Coordina-tor), Joanne Malenko (Movement Disorder Nurse, partly funded by Parkinson Society Canada)), Sandra Funk (HD Resource Centre Director and Movement Disorder Social Worker), Robin Walmsley (Neurophysiology Technologist), Ina Varga (Doctor’s Assistant), Renee Worrell (Receptionist). A Neurosur-geon, Dr. Jerry Krcek, is also part of the team. He operates at the Health Sciences Centre and implants Deep Brain Stimulation (DBS) and sees patients for follow-up. Renee Kreck (DBS Nurse Clinician) and Andrea Kilgor (the neuropsychologist who does the DBS psychological assessments) are also located at the clinic. In the very near future there will be a geriatric psychiatrist, occupa-tional therapist, physiotherapist, and speech language pathologist joining the team.

Quality individual patient care is the primary goal of the clinic team. The next priority is to educate other healthcare professionals to enable them to provide quality care for their patients with movement disorders. As well, ongoing medical and surgical research trials for Parkinson’s disease and other disorders are being conducted at the clinic.

The clinic is located in the Women’s Trib-ute Memorial Lodge, on the grounds of Deer Lodge Centre. (Deer Lodge Centre is a progressive 487-bed long-term care and rehabilitation facility providing a variety of in-patient, outpatient and outreach programs to the community.)

The Manitoba Huntington Disease Resource Centre can be reached at (204) 772-4617 or sfunk@huntingtonsociety.ca

North Bay, ONBy Julie Denomme, Northern Ontario Hun-tington Disease Resource Centre Director

The Center for Movement Disorders, North-ern Huntington Clinic has been in operation for over 10 years. Under the leadership of Dr. Mark Guttman, the multi-disciplinary team is comprised of Dr. Guttman, the neurolo-gist, Francine Robert, clinic coordinator and genetic nurse, and Julie Denomme, Director of the Northern Ontario Huntington Disease Resource Center.

Clients are referred to the clinic through dif-ferent venues, however everyone is required to obtain a referral from their family doc-tor. Referred clients are seen face to face for their initial visit, with follow up through the North Network Telemedicine every six months. Those supporting the client and the client themselves are connected through the Telemedicine teleconference unit and the nurse on location is trained to do the neurological exam that is supervised by Dr. Guttman. Any medication prescribed is faxed to the pharmacy and a letter of the examina-tion is sent to the family doctor. This allows individuals to stay in their hometown for an extended period though the progression of the disease.

In addition his, the clinic is conducted onsite in the Sturgeon Falls, North Bay and Sud-bury area. Once a year the clients are seen face to face. The Team is actively involved with clients and they do follow-up with them regularly in between clinic appointments. They make sure that any referrals to re-quired services are made and that significant changes in situation are reported to all team members.

Dr. Guttman is an active participant in the Huntington Study Group, which conducts

clinical trails for HD drugs, and visits clients in the communities of North Bay, Sturgeon Falls and Sudbury on a regular basis.

Anyone residing in Northern Ontario can contact the Northern Ontario Huntington Disease Resource Centre for more information at (705) 969-9771 or jdenomme@huntingtonsociety.ca

North York, ONBy Rozi Andrejas, Toronto Huntington Dis-ease Resource Centre Director

Initial discussion about the formation of a Huntington Disease Clinic began in the win-ter of 1995 at North York General Hospital. This joint meeting was between the Hunting-ton Society of Canada (Ralph Walker and col-leagues), and North York Hospital (Dr.Wendy Meschino, Anne Summers, and colleagues). Discussions centered on the purpose of forming a multidisciplinary clinic- aimed at improving services for patients, and creating opportunities for the team to share ideas and research potentials.

A process by which clients would be seen at the clinic was established, including the decision for the team to not see the patients when they initially received results. For those patients who received a positive test result, the entry point would be the neurologist with other services plugged in as the need arises. The service team was outlined as: neurology, genetics, psychiatry, social work (provided by the Huntington Society of Canada) speech and swallowing. Family members book appointments in advance, although some exceptions are made to calling those without families due to the complications associated with disease progression.

Team meetings occur at the beginning of the day to review all clients who have appoint-ments on that particular day. Clinic days are held twice monthly on a Wednesday.

The clinic has partnered with researchers at several centers to offer patients an oppor-tunity to participate in a wide range of HD related research groups. .

The Toronto & Area Huntington Disease Resource Centre can be reached at (416) 494-1221 or torc@huntingtonsociety.ca.

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.

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HSC Chapters Raise Community AwarenessBy Wayne Greenway, Manager, Chapter Development

The Huntington Society of Canada Chap-ters and Area Representatives have always received strong support from their local communities; hundreds of merchants, orga-nizations and individuals provide prizes and sponsor events each year. This year more HSC Chapters and Area Representatives than ever, are partnering with service clubs, athletic organizations, church groups and others to organize events. Other Chapters have become the recipients of funds from an event organized by a community club or group. Some of these generous gifts have come to the Chapters because of increased public awareness or through families living with HD. Several chapters are initiating new outreach strategies to engage service clubs in helping to raise awareness across their community.

“Many service clubs had been unaware of HD or HSC until we made our presentations, and since hearing our compelling story they are now asking how they can help!” says Heath Sterling, HSC Toronto Chapter Acting President. “Their members have experience running events which is an excellent resource if they are willing to work with us” says Ellen Foster from the HSC Toronto Chapter. “And it is a valuable way to raise awareness with people who have a wide range of contacts in the community” continues Foster.

The HSC Southern Alberta Chapter has 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 such a success. In working together on the event, Rotarians came to understand more about the disease and they were impressed by HSC’s work with families, its research strategies, and overall leadership”, says Jacob Hendriks, HSC Calgary Chapter President. They wanted to do more for our families and just last year the club approved a community partnership gift to sponsor the publication of the Caregiver’s Handbook for Advanced-Stage Huntington Disease.

Another idea is to partner with a local busi-ness in raising funds. The Southern Alberta Chapter teamed up with Newbury Spa located in Calgary for May Awareness Month. In recognition of Huntington Disease Awareness Month, Newbury Spa generously donated 10% of all spa treatments sold during May to HSC. A coupon book with more than $100 in discounts on Newbury Spa treatments is also

available through the Spa and HSC volunteers. This event set around the Mother’s Day theme garnered widespread media attention raising awareness about HD and HSC. “It was a ‘win-win’ situation” says Hendriks.

In Ottawa, the local chapter of The Daugh-ters of Penelope who have been supporting the needs of communities in North America since they were founded in 1927, organized the spectacular Compassion with Fashion show which raised over $20,000 for HSC last year. “It was an opportunity to raise the level of awareness about HD and HSC in a whole new sector of the community. We also had the privilege of learning from an organization who are truly experts in event management” says Ray Bailey President HSC Ottawa. “The event created more media attention around an event than the chapter has ever had in its history ”.

HSC London Chapter was delighted to receive support from the Exeter Knights of Columbus who organized the First Annual Knights of Columbus Walk for HD. “We are so happy to receive their assistance”, says Dianne Skika-vich, HSC London Chapter Executive Member.

“Many of our volunteers have family members who are very ill and require a lot of support. I am hoping that more organizations like the Exeter Knights of Columbus will help us in the same kind of way. It helps us to keep up our fight against HD”, continues Skikavich.

Other are following the lead of the Knights of Columbus in support of the HSC London

Chapter. Katie Geale and Leah Skinner are currently cycling across Canada and have said that HD funds they raise in “Going for a Cure and Nature” will be contributed to he HSC London Chapter.

Doreen Marks, an Area Representative in Kelowna, BC has had tremendous success in approaching service clubs, raising over $10,000. last year .“I work on my own in my community, as an HSC area representative, and service clubs have been wonderful to us”, she says.

HSC Peterborough Chapter have made numer-ous presentations to service clubs and commu-nity groups in their first year of operation. “The clubs and groups have helped us in so many ways, and it was an excellent way to spread awareness and to get the help we needed in starting up our chapter” says June Wanamaker, Chapter Co-president.

Similar efforts aimed at reaching out to others in the community are underway in Saskatoon, Ottawa, and Sault Ste Marie. Reaching out to others in the community ensures that two im-portant things happen. Firstly, community orga-nizations (service clubs, student associations, sporting organizations and others) becomes mobilized to help the broader community to become aware of HSC’s critical role in support-ing families living with HD and partnering with international leaders in research to find a cure. Secondly, they become tremendous assets in making HSC Chapter events and projects a wonderful success.

Niagara Falls International Marathon:October 28th 2007!Niagara Chapter volunteer Judy Koczula is working hard to coordinate the Huntington Society of Canada’s participation in the Niagara Falls International Marathon, which will be taking place on October 28th, 2007! This world-class event draws participants from around the world, and the Huntington Society of Canada continues to be a promi-nent beneficiary of proceeds raised from this race. We’re encouraging participants who want to run, walk or wheel their way through the course to raise funds for the Society and our programs!

The Casino Niagara International Marathon is a qualifying event for the Boston Mara-thon, and the route takes participants through sites in both Canada and the United States – an interesting and challenging route! If you’d like more information about this event, or would like pledge forms, contact Judy Koczula at (905) 354-5744, or to pledge participants please visit http://www.sporg.com/pom/registration?cmd=event_info&event_id=83061

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Huntington Society Retail Loyalty ProgramsDid you know you could help raise funds for the Huntington Society of Canada (HSC) in your everyday shopping? HSC is involved in loyalty programs across the country; please see the list below for ways you can get involved.

Husky / Mohawk:Simply swipe HSC’s card when you fuel up or shop at Husky and Mohawk. The Society will receive 2% of all purchases, including fuel and convenience store items.

Air Miles: 8007 9�1 8083Use the HSC Air Miles card or ac-count number when you shop at any participating retailers. The Society will accumulate the Air Miles points to be used for airfare and/or items needed for our many events.

Calgary Co-op: 772�92Use the HSC’s Co-op membership to purchase groceries, prescriptions, liquor and travel. The Society will receive cash back as a patronage return at the end of the year.

Shoppers Optimum PointsYou, your friends and family can now donate Shoppers Optimum points to the Huntington Society of Canada. You select how many points you’d like to transfer. The Society will redeem the points for things needed to run our many events and activities.

Obtaining a Shoppers Optimum card is free and the application can be com-pleted in minutes at any Shoppers Drug Mart. Points are earned when you make purchases:

• At Shoppers Drug Mart stores

• At Shoppers Home Health Care stores

• On your CIBC Shoppers Optimum Visa card.

To donate points, log on to your account on the Shoppers Optimum website https://www.shoppersoptimum.ca/Op-timumTransfer/en_CA/charity.do and select the Huntington Society of Canada from the National charities list.

For all the above cards or for more infor-mation, please contact: Julie Martini at curehd@shaw.ca or (403) 860-6277.

Update from Health Canada

New Substances Notification Regulation for Organisms (NSNR(O))

Proposed Federal Government Changes to the Registered Disability Saving Plan

In the Spring of 2006, Health Canada pro-posed changing the “New Substances Notifi-cation Regulation for Organisms (NSNR(O))”. These proposed regulations would have changed the importation of live organisms (e.g. mice) and potentially hindered the vital HD research currently being conducted in Canada. In The Know profiled this informa-tion in July 2006 and asked that those in the HD community to write to show their dissat-isfaction with these proposed changes.

HSC has been in contact with a representa-tive from Health Canada, who has reported there was an overwhelming response to the proposed changes. They are currently reviewing the comments and are revising the proposed changes to take into consideration the information provided by HSC and other organizations. Once this has been reviewed they will come back to the primary stake-holders for comment. HSC will continue to keep you aware of any updates as they become available.

This proposal is in response to the March 2007 Budget, in particular the Registered Disability Saving Plan

Registered Disability Savings Plan (RDSP)In the March 1007 budget, the Finance Min-ster, Hon. Jim Flaherty, proposed the estab-lishment of the Registered Disability Savings Plan (RDSP). In this plan individuals, parents and grandparents would be able to save for a person (i.e. child, children) with a disability. This plan will enable people to save tax-free until withdrawal (similar to an Registered Education Savings Plan). There are two crite-ria for this program: they must be eligible for the “Disability Tax Credit” and be a Canadian resident or parent or legal representative of a person who is resident in Canada. This is an opportunity for parents, or grandparents, with profoundly disabled children, grandchil-dren to save for future costs of home care, health care, etc.

An opportunity like the RDSP would enable individuals with progressive, genetically inherited diseases, such as Huntington disease, to plan and prepare for their future. The Huntington Society of Canada has worked with many families who struggle with the burden of the un-funded costs of support-ing individuals with HD in the community, such as nutrition supplements, respite care, transportation, equipment needs, and a host of other related costs.

The current eligibility for RDSP means indi-viduals with HD would not be eligible until

they met the criteria for the Disability Tax Credit, i.e.: disabled to a point where it is un-likely that they would be able to work. Once an individual is no longer able to be gainfully employed, their un-funded health care costs increase, and there is a potential reliance on other forms of government assistance. At this point in their lives it is not likely that they will be able to save and garner the benefits of this program.

The Huntington Society of Canada proposes that the eligibility for the Registered Dis-ability Savings Plan be amended, allowing for individuals with Huntington disease to save for their future. Amending eligibility for the RDSP to include those individuals with a diagnosis of HD or those who have undergone predictive testing and have been determined to be gene positive, will allow them to plan for their future during their most productive employment years, before the symptoms of HD make working no longer possible.

Don Lamont, on behalf of the Huntington Society of Canada, has sent background information and a letter to the Minister of Finance outlining our position on this pro-posed change. It will also be important for Chapters and individuals who are connected with the HD community to also let their voice be heard. The HSC website has a letter which you can print and send to the Hon. Jim Flaherty letting him know your position, and agreement with the proposal stated above. The letter can be found at www.huntingtonsociety.ca

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DEAR HSC…I have heard a lot about clinical trials and research and I think that I might like to participate. What do I need to know before I can do this?

Anne in Saskatoon

Dear Anne,

Research into Huntington disease is vital to the development of effective treatments and a cure for this debilitating disease. The Huntington Society of Canada is aware of the importance of research and has as part of its mission to “further research to slow and pre-vent Huntington disease”. We do this through the funding and support of key individuals who are doing work in the HD field, as well as working jointly with other groups, such as the Huntington Study Group and HighQ.

Before you consider participating in research there are a number of things for you to think about:

• Why do I want to participate in research?

• What types of research will be conducted?

• How do I contact those who are doing research?

• How do they take care of my best interests and minimize risk to my family and me?

• Once I start participating how long do I have to continue?

Lets look at these questions one at a time.

Choosing to ParticipateAt the 2006 HSC Conference, we conducted a survey to ask people about their views of research and why they did, and did not par-ticipate. The results of this survey showed that for those who participate in research the main reason they do so is that it is important to them that they be a part of finding a cure. As well, they have an interest in research and knowing more about HD. For those who did not participate the main reason was that they were afraid and did not know much about the research process and how they could help.

For each person who participates in research it is an important personal decision, but one that should be based on accurate informa-tion. This freedom of choice is built into how researchers conduct their work, and you should never be pressured to participate, and always feel free to ask questions.

Types of ResearchResearch is generally divided in to two categories: basic and applied research. Basic research is when a researcher has a

particular idea or interest that he/she will investigate without a particular application in mind. This type of research can be very valu-able to improving knowledge about diseases or chemical responses, for example.

Applied research is when a researcher has a particular application for the information that will be learned from the investigation. Clini-cal research or trials are a common form of research in Huntington disease. In these studies, volunteers are involved in assist-ing investigators to verify clinical process, medications, procedure, etc.

Many different types of people can partici-pate in research: those with HD, those at risk, and families. This will depend on the type of research that is being conducted at any given time, by each researcher. Essen-tially, not every person is appropriate for every research study. There are often spe-cific criteria that you will need to meet: age, gender, risk status, etc. Just because you may not be a candidate for one study, it does not mean that you will not be appropriate for other studies. Because research can happen in many different ways, interviews, analysis of blood and other specimens, taking a new drug or trying a new method of treatment, each research study will be different. For example, in Canada there are researchers who are looking at:

• Effects of Coenzyme Q10,

• The PHAROS Project looking at the natural history and experience of those at risk who do not know their status; and

• COHORT a long term observational study of those with HD.

Who is doing HD research in Canada?Trials are untaken with informed and consenting volunteers, and are conducted according to conducted procedures. The evaluation and results are closely and care-fully monitored There are many research-ers who are doing investigations in Canada, which may or may not be appropriate for you. If you are interested in participating in clinical research, talk with the Huntington Society of Canada National office or a local Resource Centre Director, or member of your care team (genetics, neurology, psychiatry, social work) to see if there is some way that you can participate.

Protecting Research ParticipantsBefore any research can be conducted it must meet specific guidelines that ensure that individuals who participate in the re-search studies have all the information about the study, the risks and benefits to them, and have provided their consent.

In order for any researcher to get approval to do research, they must adhere to ethical standards that are set out internationally. In Canada, the federal government sets the minimum standard in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (http://www.pre.ethics.gc.ca/english/policystatement/policystate-ment.cfm). In this statement it outlines the principles that researchers must build into the research application:

• Respect for human dignity

• Respect for free and informed consent

• Respect for vulnerable persons

• Respect for privacy and confidentiality

• Respect for justice and inclusiveness

• Balancing harm and benefits

• Minimizing harm

• Maximizing benefit

Essentially, these principles when put into practice will mean that the research that you are participating in will treat you with respect, keep you aware of all important information so that you can decide if you want to join, keep all information about you private and confidential, it will be fair and include a variety of people (gender, ethnicity, etc. where appropriate), the risks that you will be exposed to will be minimized, and that there will be the most benefit possible. While there still may be some risk, you will be informed of this and will be able to make your personal decision with the information that the researchers provide to you.

To ensure that these responsibilities are followed, each investigator must include approval from an “Office of Research Ethics”, with the institution that they are connected with, e.g.: university, hospital, etc. Those that are funding the research also require that the research be followed ethically.

Clinical Trials in CanadaAdditionally, there are special precautions that are taken when researchers conduct clinical trials with drugs in Canada. In Canada, drugs are authorized for sale once they have successfully gone through an extensive drug review process. This process falls under the mandate of Heath Canada’s Health Products and Food Branch (HPFB). This branch is responsible for the approval process for pharmaceutical drugs, vitamins, vaccines and medical devices from pre-clinical trials to post market surveillance, inspection and investigation. Throughout the process, the safety and well being of Canadi-ans is the paramount concern.

continued on page 11

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Please let me introduce myself. My name is Alice, and I am a wife and working mother in her mid-thirties with two adolescent children. I am your average wife and mother, like any you would find in your community, or across Canada. However, I potentially have something in my genes that sets me apart from the general public. My genes may contain a mutation that sets me apart from you. I am at risk for Huntington disease.

Huntington disease is a fatal neurodegenerative disorder. It progressively destroys both mind and body, eventually taking away the ability to speak, walk, and even eat without help. My father has the HD gene, which means that I have a 50% chance of inheriting the same fate.

I have not undergone genetic testing, so I do not know whether I have the gene, but I live with the knowledge that I may be one of the 1 in 10,000 Canadians with the disease. However, I already am one of the 1,000 whose lives are touched by HD, as not only does my father have the disease, but I am also his caregiver.

My father is currently in the mid-stages of the disease and lives with my family and I so that I can care for him. He leads a very full life, and is managing his symptoms well.

Ever since my father was diagnosed with HD, I have been active with the local Chapter of the Huntington Society of Canada (HSC). I currently sit on the Chapter Executive and I work hard with other local volunteers to raise awareness and funds for this little known disease. It is a lot of work, but I am dedicated to creating local awareness and raising funds to find a cure and support families with HD.

I have given you my basic background information, but in coming issues of Horizon I will be letting you know more about me and the different parts of my life related to HD. You will get insight into my life as a caregiver, as a person at risk, as a volunteer and chapter member. You will learn all aspects of my life and how HD plays a part in each one.

I look forward to sharing with you in the coming issues!

The intent of a clinical trial is to research and gather information on drug’s dose, effectiveness and safety in humans. Trials are undertaken with informed and consenting human subjects according to good clinical practices and ethical guidelines. This provides a controlled environment where the procedures for drug administration and the evaluation of the results are closely monitored.

Essentially, the government, offices of research ethics, and researchers themselves work very hard to protect the people who volunteer to participate in research. Everything is done to protect the people who volunteer to participate in research. The well being of individual is considered para-mount. In the unlikely event of an adverse reaction, or if a concern is expressed, the participant can withdraw at any time. Should there be any adverse effects of participation the research can be stopped immediately. As well, if at any time and individual decided that they can no longer participate, they can voluntarily withdraw.

Your ChoiceEach research study is designated to continue for different amounts of time: long (up to years) or short (days). You can withdraw from research stud-ies at any time as your life circumstances change. People who have participated in research in the past say only you can decide if this is the right de-cision for you, but the value that you may be adding to the knowledge of HD can be invaluable.

For more information about HD Research that may be occurring in your area please contact your pro-vincial Resource Centre Director or local Individual and Family Services Worker or National Office at 1-800-988-7398.

continued from page 10

Dealing out a Future…

Place your bets and ante up.We hope to deal you in.

Casino RoyaleSaturday, 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

Huntington Society of Canada presents

Tickets $125 eachTo purchase tickets or sponsor this event:

contact Jerry Lawlor at 1-800-998-7398 ext. 26

or jlawlor@huntingtonsociety.ca

My Story: Profiling Life with HD

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A cure is Blooming...Last year Amaryllis sales raised over $110,000 for research and since 1985 when the Huntington Society began selling Ama-ryllis, we have raised $1.3 million! These beautiful, bright orange plants have become a symbol of hope for many living with HD.

Every year we try to increase our sales of the plant to be able to raise more money to fight HD. This year, due to the rising cost of the plant, we needed to order a greater quantity to ensure that 1/2 the cost of the sales still goes to research. But, now we need to sell more than ever before. We need your help to meet this goal.

If you haven’t sold Amaryllis before, give it a try. The vibrant plants practically sell themselves. Or buy a case and use them for hostess gifts, employee gifts, or simply give them away to friends and family!

If you are a current seller, please consider adding an additional case to your order. Here are some great suggests from other sellers:

• Door to door approach- leave pamphlets in mailboxes around your neighbourhood with your name and telephone number on them, sell to people interested. It is a great way to meet your neighbours!

• Set up outside of your local grocery store. Be sure to obtain the store’s permission first.

• Keep a case of them in your car. Wherever you are, they are available for sale. Talk about the bulbs to people at your destina-tion.

• Take a couple cases to work. Co-workers will love the convenience of being able to obtain a gift without leaving work. They may also want plants to brighten up their workspace.

• Word of Mouth – Talk about the kits and the cause to friends and family.

• Take them to church. Advertise in the Church bulletin or leave brochures in the vestibule, or take them with you to prayer groups or bible study.

• Students: ask if you can set up a display at your school, college, or university. Post notices on community bulletin boards, in the school paper, and leave brochures in the cafeteria.

• Go high tech – send an email to all your family and friends telling them about the cause how their purchase can help. Other

suggestions include: put an add on Face-book, talk about them in chat rooms, or set up a website where people can get infor-mation and see the flowers they purchase from you. Be sure to use caution, however, when dealing with strangers.

• Talk to your Employer or Friends with businesses about purchasing cases to use for employee gifts or for client apprecia-tion.

With your help, we will raise more money than ever before in the fight against HD. A cure could be one plant sale away! If you have tips for selling you would like to share, please send me an email at ebonkink@huntingtonsociety.ca.

Amaryllis sells for $12/kit (includes bulb, pot, and soil in an attractive box). There are 12 in kits in a case. For every kit sold $6 goes to research for a cure. No matter where you live in the country, we can courier a case to you to sell. Delivery dates are available from September to December. Contact National office at 1-800-998-7398 or info@huntingtonsociety.ca to order your case of Amaryllis or to increase your order.

Return undeliverable Canadian addresses to:

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