Angelina Jolie highlights benefits of genetic testing; But Canadians lack the protection Americans have against genetic discrimination. To learn more read the Canadian Coalition of Genetic Fairnesss press release here.

I have a 50% chance of inheriting Huntington disease and my genetic test results will tell me my fate.

Visit the Media Centre to view the full campaign.

Press Releases:

PR 1 - Walkerton & GTA, ON
PR 2 - London, ON
PR 3 - Saskatewan
PR 4 - Toronto, ON

A Note from Bev Heim Myers, CEO and Executive Director of the Huntington Society of Canada and the Chair of the Canadian Coalition For Genetic Fairness.

Friday April 19, 2013

On the heels of the very informative CHDI HD Therapeutics Conference, in Venice, this week has been a very productive week in furthering genetic fairness in Canada.

On Monday, I met with the Honourable Senator James Cowan, in Ottawa, to discuss genetic discrimination in Canada.  On Wednesday, Senator Cowan gave Bill S-218 first reading in the Senate. This is the most comprehensive non-discrimination Bill to date. You can access Bill S-218 here. This is a big step forward to end genetic discrimination for all Canadians. Please do what you can to keep the momentum going! Call/email your senator, you can find your senator and their information here, or call your MP and let them know that Bill S-218 has your support. You can find a list of MPs here.

My week has ended with participation on a Cafe Scientific Panel, hosted by the Canadian Institutes of Health Research (CIHR) in Montreal.  The discussion focused on genetic testing, the benefits of genetic testing and the risk of genetic discrimination.  You can watch the webcast here.

More and more Canadians understand the importance of protecting our very complicated, personal, genetic information. Genetic sequencing promises to increase our understanding of disease risk, prevention and treatment.  Let's continue to work together to remove the barrier of genetic discrimination.

Thank you for your ongoing support of the Huntington Society of Canada and believing that together we will make a difference.  A difference for the HD community and all Canadians.

Cafe Scientific Panel Webcast

BILL S-218

On April 17, 2013, the Honourable James S Cowan QC, Leader of the Opposition in the Senate has introduced a very comprehensive Bill in the Senate to end Genetic Discrimination in Canada.

View press release here.

The Huntington Society of Canada and the creators of "Do You Really Want to Know?" made a powerful, short video about HD and genetic testing. The video depicts the striggle of those with HD and explains genetic discrimination. Help us spread the word and share it with your friends.View it here.

HSC launches Navigator and New Pathways 2013 Research Competition. A "Letter of Intent" has been added to the application process.

Timeline:

• February 22, 2013 - Letter of Intent due by 3 p.m. (ET)
• March 15, 2013 - Request for full proposal communicatied to successful applicants
• May 17, 2013 - Full proposal due by 3 p.m. (ET)
• July 1, 2013 - Funding may commence

Click here to view Navigator Terms of Reference

Click here to view Navigator Application Form

Click here to view New Pathways Terms of Reference

Click here to view New Pathways Application Form

Journal of Huntington's Disease

The Journal of Huntington’s Disease (JHD) is a new high-quality journal giving equal weight
to original research in basic science, translational research and clinical studies in
Huntington’s disease and related disorders. The journal is headed by Editors-in-Chief
Blair Leavitt (University of British Columbia) and  Leslie M. Thompson (University of
California, Irvine) and boasts a first rate editorial board.                         
 
The Journal of Huntington's Disease is an international multidisciplinary journal that aims
to facilitate progress in understanding the genetics,  molecular correlates, pathogenesis,
pharmacology, diagnosis and treatment of Huntington's disease and related disorders. The
journal is dedicated to providing an open forum for original research in basic science,
translational research and clinical medicine that will expedite our fundamental understanding
and improve treatment of Huntington's disease and related disorders.

The second issue is available online here.

Journal of Huntington’s Disease is now accepting papers.

Submit your manuscript online via msTracker or contact us at jhd@iospress.com.
 
View our detailed Instructions to Authors
 
Aims and Scope
 
Click here for all subscription options
Volume 1 (4 issues) 2012

Bev Heim-Myers, Chair of the Canadian Coalition for Genetic Fairness and CEO and Executive Director of HSC, writes in the Globe and Mail December 11, 2012 about the case for legislation to protect Canadians' genetic rights as part of the Globe series, The DNA Dilemma. Read the full article here http://www.theglobeandmail.com/news/national/time-to-lead/do-we-need-legislation-to-protect-canadians-genetic-rights-the-yes-side/article6188021/

HSC's 2011/2012 Annual Report and Financial Statement are now online. Click here to read about our successes.

Write your MP and ask them to support Bill C-445 and help protect all Canadians!
Download letter here 

Private Members Bill put forth in Ottawa on October 2nd  by NDP MP Libby Davies (Vancouver East).  Bill C-445 Read the full release here

Registration is now open for HSC Huntington Disease National Conference.  This year the conference will be held in downtown Toronto, Ontario,

Conference Dates: November 9 - November 10, 2012

To Learn more please visit www.conferenceHSC.CA

This years HSC will also be hosting a special YPAHD day - for youth by youth on November 8, 2012, the day before the conference begins.  Please click here to learn about this special day to support HD youth.

Congratulations to our very own Mack Erno,  Peace County, Grand Prairie, AB Chapter President has made it to the Top 10 Finalist for UFA’s Small Town Heroes Contest!

Mack needs your help! Mack can become a winner and win $10,000, a portion of which will go towards Huntington disease research and support programs!

To VOTE or learn more about Mack’s story please visit http://bit.ly/VOTEforMACK

Please share this  your contacts so we can all help Mack win!

Remember:  Everyone VOTE once a day EVERYDAY from now until August 31st, 2012.

Thank you for your help! It will take all of us to make Mack the winner!

Research and clinical care in HD are constantly moving forward. Without effective disease-slowing treatments it can easily feel like nothing is happening. Until that breakthrough arrives, there is still plenty we can do. "Optimizing Life" with HD means staying active, informed, and involved. Join Dr. Wild as he helps us to see what we can do and how we can do it.

Dr. Wild will be joining us via live videoconferencing at the following locations. 

Registration is FREE.  Click your location link below to sign up to attend.

• Victoria, BC
• Grande Prairie, AB
• Winnipeg, MB
• Sudbury, ON
• London, ON
• Halifax, NS
• Moncton, NB