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In the Know – December 2016

Volume 11, Issue 12

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GENETIC FAIRNESS

Life insurers’ concession on genetic testing likened to eleventh-hour tactics of Big Tobacco
National Post – November 22, 2016

Liberal Chris Bittle sparked controversy with his statements about the insurance industry and it’s relation to Bill S 201 at it’s justice committee review late last month. Read the full article here.

Constitutional experts back Liberal backbencher’s genetic discrimination bill
iPolitics – November 1, 2016

Writer Kyle Duggan writes about the support Bill S-201 has received from both the constitutional experts and both liberal and conservative parties in this article. Read it in full here.

HSC NEWS

National honour for Armstrong volunteer
The Morning Star – December 1, 2016

Laurie Williams, of the Huntington Society of Canada’s Okanagan Chapter, has received the society’s national award of merit for volunteers. Congratulations to Laurie – we are thankful for everything you do (and it is a lot)! Read the full piece here.

Western’s Jeff Carroll Awarded New $800k grant to research Huntington disease
Western Washington University – November 29, 2016

Frequent HSC collaborator (and HD community favourite!), Dr. Jeff Carroll, has been secured an $806,805 grant to assist in his continuing research into the causes and potential treatments for Huntington disease. Read the full piece here.

Any questions about HD? Ask the doctor
Launched November 24, 2016

Do you have any questions about Huntington disease (HD)? Do not hesitate to ask Alzbeta Mühlbäck, using the contact form on the European Huntington Association’s website. If you have any questions about the disease – you can send it to Dr. Mühlbäck using the form linked here. You can ask questions in English, German, Slovak, Czech, Serbo-Croatian, and Turkish!

Believe Campaign Video and YPAHD Video

Click here to see a video combining #IBelieve statements from all across the HD Community.
Click here to see a recap of the 2016 YPAHD Day video made during this year’s national conference.

Amaryllis Campaign Huge Success!
SOLD OUT! Thanks to all of our sellers.

We are thrilled to announce a complete sell-out of the 2016 Amaryllis Campaign with over 20,000 Amaryllis bulbs growing and inspiring hope across Canada. A sincere thank you to each and every one of our dedicated volunteer sellers who helped reach our goal of raising over $115,000 to fund services for families affected by Huntington disease and to support HD research. As your Amaryllis starts to grow, please send in your photos! Our 2016 photo contest is in full swing and we want to see you. Take a selfie, take a photo with your pet, take a photo with your grandchild, we want to see them all! Photos are a fun way to stay connected to the campaign and show off those big, beautiful, orange sovereign bulbs!. Send those photos to amaryllis@huntingtonsociety.ca  Thank you for your tremendous and continuous support and all you are doing to inspire hope! 

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.

Educational Huntington Disease Videos Available in English, French and Innu
UAUITSHITUN Santé et Services sociaux

This website provides details on a variety of topics in relation to Huntington disease, ideal for anyone looking for more information. The videos are available in 3 languages. Click here to check them out.

RESEARCH NEWS

Measuring the Family/Friend Caregiver Experience in Ontario: Pilot Study Results
November 15, 2016 – HSPRN, University of Toronto

To read the results of the survey over 300 caregivers completed, please click 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.

N2 Clinical Research Participation Experience Survey (Available in English & French)
Open until March 31, 2017

N2 is assisting with recruitment for the Canadian Clinical Research Participation Survey funded by the CCTCC (Canadian Clinical Trials Coordinating Centre).  Clinical researchers in Canada would like to hear from patients and study volunteers about their experience with clinical trials.  Any Canadian who has ever been approached to participate in a clinical trial and either declineddid not qualify or participated is invited to respond. Click here to fill it out now.

Psychological health of people affected by Huntington disease survey
Open until February 2017

Aimed at those who have tested positive for HD but have no formal diagnosis for the disease, this survey aims to discover how gene-positive individuals regulate their own emotions and recognise them in others. The survey aims to get a better understanding of how HD impacts the psychological well being of affected people (which is still quite an unexplored field, unfortunately). The study has been fully approved by the Research Ethics Committee of the Faculty of Health and Medicine of Lancaster University (this is an overseas project and not from HSC). Click here to complete the survey.

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