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In the Know – October 2016

Volume 11, Issue 10

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GENETIC FAIRNESS

American Society of Human Genetics Honours Senator James Cowan and Bev Heim-Myers with 2016 Advocacy Award
October 12, 2016

The American Society of Human Genetics (ASHG) has named the Canadian Coalition for Genetic Fairness (CCGF) and Senator James Cowan, LLM, QC, as the 2016 recipients of its annual Advocacy Award.Senator Cowan and Bev Heim-Myers, Chair of the Canadian Coalition for Genetic Fairness and CEO of the Huntington Society of Canada will be honoured by the ASHG on Friday October 21, 2016. See the press release here.

Can genetic discrimination bill protect patients from insurance hikes?
CBC’s The Current – September 23, 2016

Scientific advances have allowed us to know more about our genetic makeup. But for some, genetic testing may risk getting insurance. Parliament is debating a proposed law meant to put a stop to genetic discrimination but insurers are warning against it. Watch the segment here.

Parliament must act quickly to end genetic discrimination
Toronto Star – September 22, 2016

Canada is the only G7 country without protections to prevent genetic discrimination, including measures to stop employers or insurance providers from demanding individuals to take genetic tests or disclose results. Read the full article here.

It’s time to ban genetic discrimination
Toronto Star – September 21, 2016

The Toronto Star adds their two cents to the growing conversation about a Senate bill that would end genetic discrimination based on genetic testing that now warrants strong support from the House of Commons. Click here to read the full article.

Why we need a law to prevent genetic discrimination
The Globe and Mail – September 19, 2016

Canada is close to catching up with other Western countries in protecting the most fundamental of information: our genetic code. Read about the importance of Bill S201 here.

Genetic Non-Discrimination Bill Opposed By Insurance Industry Set for Debate
The Huffington Post – September 19, 2016

Bill S-201 has passed unanimously in the Senate and is Liberal Senator James Cowan’s third attempt at protecting from repercussions by employers or insurance companies, any Canadians who want to be genetically tested. Read the full article here.

Discussing genetic discrimination: creating a new Canadian law
Biotechnology Focus – September 19, 2016

Episode 28 of Biotechnology Focus’ Podcast series features an interview with Jeff Graham, BLG’s National Life Sciences Group Leader, who discusses genetic discrimination and Canadian law. Hear the full podcast here.

HSC NEWS

One on 1 Profile: Geneticist Dr. Nancy Wexler leads the fight against a dreaded disease she’s at risk of developing
The Warner Cable News 1 – October 11, 2016

Dr. Nancy Wexler is a leader in researching one of the world’s most dreaded illnesses, Huntington disease. Her work has global, as well as personal implications — the disease runs in her family, and she’s at great risk of becoming one of its victims. To read the full profile, click here.

Michael Hayden Inducted into the 2017 Canadian Medical Hall of Fame
UBC Faculty of Medicine – October 7, 2016

Michael Hayden, University Killam Professor, Department of Medical Genetics is among six individuals inducted into the 2017 Canadian Medical Hall of Fame. The recognition is given to those who have made contributions to medicine and the health sciences in Canada and the world that have led to extraordinary improvements in human health. Read the full piece here.

Consulting with Canadians to introduce more flexible and inclusive support for parents and family caregivers
Government of Canada – October 6, 2016

The Government is looking to all Canadians, particularly parents and caregivers, to join the conversation and share their views and experiences. This is an opportunity for Canadians to share their thoughts on the sort of adjustments that are required to improve Canada’s EI maternity, parental and caregiving benefits programs. Learn more by clicking here.

Care team gets to the heart of Huntington Disease
The Vital Beat – September 21, 2016

Edmonton General Continuing Care Centre (EGCCC) Unit 4Y is in the spotlight this month for going the extra mile to seek more education on caring for residents with Huntington disease. To read the full article, click here.

CCGF & HSC PSA Airs At #TIFF16

Click here to see coverage of our PSA airing at the 2016 Toronto International Film Festival.

Australia and New Zealand HD Youth Camp 2017!
Applications accepted until November 10th!

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

Video: Young Couples Impacted by HD
HDYO

HDYO takes a look into the lives of four young couples who are impacted by Huntington disease in some way. They talk about how they first discussed HD and how they cope with HD in their lives. Click here to see the video.

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 inspirehope.ca, email amaryllis@huntingtonsociety.ca, 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.

Understanding Behaviour 3rd Edition Now Available

Click Here to access an online copy of this comprehensive guide.

Help raise awareness and funds!
HealthPartners

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 info@huntingtonsociety.ca 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.

RESEARCH NEWS

Sorry folks, the PRIDE-HD trial did not show that Pridopidine slows the progression of Huntington’s disease
HDBuzz – September 30, 2016

A recent press release from Teva Pharmaceuticals has the HD community excited, claiming “Pridopidine Demonstrates Slowing of Progression of Huntington Disease in PRIDE-HD Study”. What’s pridopidine, and what can we really say about HD progression in patients treated with it? Read the full article here.

EuroBuzz 2016: The Euro-HD network meeting in the Hague
HDBuzz  – September 23, 2016

HDBuzz rounds up all the tweets (and all the science) presented at the 2016 European Huntington’s Disease Network biennial meeting – one of the biggest meeting of Huntington disease families, scientists, and care professionals. 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.

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