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In The Know – October 2017

Volume 12, Issue 10

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Symposium

The National Symposium, which took place on October 14, was an opportunity to gather with the HD community and learn about the latest in Huntington disease research.  This was our highest attend Symposium ever, with over 400 individuals taking part at one of our 18 sites across the country or by viewing the webcast.   If you missed the event, not to worry.  All the videos and handouts from the Symposium  can be found on the Huntington Society of Canada’s website at this link.

Did you attend the Symposium on October 14 in person or via the webcast?

If so, we would love to get your feedback and input.  Our survey will only take 3 minutes to complete.   Click here to complete the Symposium survey.

GENETIC FAIRNESS

Canadian Insurers out-of-date on genetic testing
Life Health Professional – September 27, 2017

The Canadian Life and Health Insurance Association’s opposition to the Genetic Non-Discrimination Act ignores lessons learned in other nations.  Click here to read the full article.

HSC NEWS

Global Huntington’s Disease Patient Advocacy Organizations Unite to Form Huntington’s Disease Coalition for Patient Engagement (HD-COPE)
Rare Disease Report- September 20, 2017

The Huntington Society of Canada, European Huntington Association, and the Huntington’s Disease Society of America are proud to announce the formation of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE), a new global coalition to give families who are affected by Huntington disease a direct and impactful voice in HD clinical research.  Click here to read the full article.

Founders Walk raises nearly $24,000 for Huntington disease research
Cambridge Times- September 19, 2017

Efforts to find a cure for Huntington’s disease received a boost on Saturday, Sept. 16, as participants made their way around Riverside Park in Preston for the Grand River Founders Walk.   Click here to read the full article.

HD Camino Walk

Have you been following Ellie, Isla, Anne and Marlene as the walk the Camino De Santiago Trail for Huntington disease?  You can read their blog and follow their journey by clicking here. 

Regina Raises Funds

In August, Shelby Smith, her boyfriend Alex and their family hosted the Regina Steak Dinner and Silent Auction to raise funds for the Huntington Society of Canada.  The event saw over 200 tickets purchased and close to $8,000 raised.  Click here to read the full article.

Ready, set, go, raise money
Winnipeg Free Press – September 15, 2017

The 21st annual event raised $20,000 for families impacted by Huntington disease. Click here to read the full article.

Serious Truth Behind Young People in HD Families
HDYO Blog – September 29, 2017

Matt Ellison is the Project Coordinator at the Huntington Disease Youth Organization (HDYO) and writes a blog post about the support that young people from HD families need.  Click here to read the full article.  The Huntington Society of Canada is one of the Premier supporters of the Huntington Disease Youth Organization.

Amaryllis Sales Continue to Bloom

Amaryllis sales continue to grow with over 80% of bulbs already sold thanks to our amazing volunteers! To learn more about this national campaign and inspire hope of a world free from HD, please visit www.inspirehope.ca

Champion of Hope

Becoming a Champion of Hope monthly donor is simple and risk free. Learn more about how a steady monthly contribution from you can help aid HD research, services and education.  Click here to learn more.

RESEARCH NEWS

New roles for huntingtin:  removing a healthy protein to understand its function
HD Buzz- September 26, 2017

Some techniques aimed at lowering mutant huntingtin can also affect the normal form of the protein. With clinical trials underway, it’s all the more important to understand the role of normal huntingtin in the adult brain.

Click here to read the full article.

Are HD Clinical Trials Measuring the Right Outcome Measure?
Rare Disease Report- October 4, 2017

A new study recently published in JAMA Neurology may have found a solution to the 2 factors limiting HD clinical trials.

Click here to read the full article.

Enroll-HD – September 2017

Click here to check out the latest updates in Enroll-HD’s monthly bulletin.

 

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