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In the Know – September 2016

Volume 11, Issue 9



As a member of the Canadian Coalition for Genetic Fairness, the Huntington Society of Canada is asking you, if you haven’t already, to send an email to federal Cabinet Ministers and your Member of Parliament, asking them to end genetic discrimination. Just click here – it’ll take less than two minutes.


“It completely changed my life,” man says of rare Huntington disease diagnosis
The Packet & Times – September 12, 2016

Orillia’s The Packet & Times is joined by HSC’s Annie Vanexem and several members of the HD community to discuss a potential new chapter and living with Huntington disease. To read the full article, click here.

Woman spent birthday dipping in all five great lakes
Chatham Daily News – August 30, 2016

Joined by her daughter and two nieces, Lori Sheppard of Blenheim, Ontario took to the five great lakes to raise money for Huntington disease and Lupus on her birthday.  To read the full article, click here.

After 25 years at Little Sister’s, Janine Fuller now faces her toughest battle
Daily Xtra – August 30, 2016

The Daily Xtra takes an intimate look into Janine Fuller’s past, present and future. Fuller, a long-time activist, author and playwright, was diagnosed with HD about 20 years ago. To read the full article, click here.

Australia and New Zealand HD Youth Camp 2017!
Applications now open!

For more information, and to submit your application, click here. 

Hope is Beautiful!
Purchase an amaryllis today and inspire hope

Since HSC volunteers started the Amaryllis Campaign, over $5 million dollars has been raised; inspiring hope and bright futures for people touched by Huntington disease (HD). If you’ve never ordered an amaryllis before, it’s easy to purchase and it’s a simple way to help those within the HD community.  The best time to order is between October and December. It’s also the best time to get your beautiful flowers potted, which will bring gorgeous blooms 6 to 8 weeks later. To order yourself an amaryllis, visit, email, or call 1-800-998-7398.

PSA Campaign

To learn more about our PSA campaign, What is Huntington Disease?, and to see where the radio and tv ads are airing in your region, click here.

Help raise awareness and funds!

The Huntington Society of Canada is looking for volunteers to engage donors at various workplaces across Canada through our partnership with HealthPartners.  If you enjoy public speaking, and are looking for a way to increase HD awareness in your community please contact us at for more information on this unique volunteer opportunity. To learn more about HealthPartners, click here.

The Power of the Dream
Terry Kelly

Life offers everyone gifts disguised as challenges. This is one of the messages Dr. Terry Kelly delivers in his keynote addresses. Terry is the living model of his message, understanding his blindness as a gift that opens possibility and opportunity. Dr. Kelly, a speaker at this year’s national conference, discusses his message in greater detail here. To register for national conference before ticket prices go up, click here.


Ultra-rare mutations highlight the importance of the HD gene in brain development
HDBuzz  – August 29, 2016

A relatively new technology called exome sequencing has identified a few families with novel mutations in their HD genes. These are different than the mutation that causes HD, but allow researchers to better understand the normal role of the HD gene. Read the full article here.

Deutetrabenazine for Huntington’s disease: a positive trial but the FDA says no? Not exactly…
HDBuzz – August 17, 2016

A scientific paper declares positive results for a trial of deutetrabenazine in Huntington disease, but the headlines report the FDA has rejected the drug. Confusing stuff! The reality is positive overall for this new way of treating uncontrollable movements in HD, but patience will be needed to see where it all ends up. Read the full article here.

Huntington Study Group

For more information about high-quality clinical research trials and studies in Huntington disease (HD), the Huntington Study Group offers the first and largest HD clinical research network of over 400 active and compassionate investigators, coordinators, scientists and HD experts at over 100 HSG Credentialed Research Sites across the globe.

Video Postcard from the 2016 HD Therapeutics Conference
CHDI Foundation

Click here to watch the postcard from Palm Springs.

A Not to Miss Webinar
HD Clinical Trials in Canada

Join us as we present a Clinical Trials Webinar on October 1, 2016. This introductory webinar will focus on what clinical trials are and why they are important, what you can expect when you first meet a clinician to talk about participation, what HD Clinical Trials are in progress now and the status of each. Featured Speakers include  Dr. Oksana Suchowersky (Professor of Medicine, Medial Genetics & Pediatrics, Toupin Research Chair in Neurology, Director of Clinical Genetics, University of Alberta), Paul McCann (Study Coordinator, University of Alberta) and Corrine Bees, a clinical trial participant.

This is a free event however registering in advance is required to reserve your space. Visit to register. Space is limited. Registration will be open until September 25, 2016.

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