Volume 13, Issue 6
ANNOUNCING HSC’S NEW CEO
Huntington Society of Canada’s Board of Directors Appoints New CEO
The Huntington Society of Canada’s Board of Directors is happy to announce the appointment of Robin Markowitz as the new Chief Executive Officer. Robin’s first day with HSC will be July 16, 2018. Click here to read the full announcement.
MAY AWARENESS WRAP UP
Light It Up 4 HD
The month of May was a successful one for the Huntington Society of Canada (HSC) as there were 123 sites that lit up 4 HD in purple and blue. Across the world people supported Juvenile Huntington disease (JHD) and Huntington disease (HD), throughout the month of May! Click here to see the wrap up video of Light It Up 4 HD!
A Month Of Awareness, A Lifetime Of Memories
HSC website
For families and individuals in the HD community, May was a month of fierce advocacy and passion for the cause that hits home for them. May was a month full of opportunities to educate the public on what Huntington disease is and how it effects their lives. Click here to see how volunteers celebrated HD awareness month.
HD COMMUNITY STORIES
In-Between Years: Life after a positive Huntington disease test
HSC Website – June 1, 2018
Steven Beatty is part of an HD family himself and received a positive result on his HD predictive genetic testing in 2015. Since that time, he has developed a passion directed at advocating for the Huntington’s disease community. Click here to read the full book summary.
Living Under the Shadow of Huntington’s Disease
Nature – May 30, 2018
Mark Newnham has seen the future, and it’s etched on his father’s face. Despite being in good health, the 31-year-old knows that Huntington’s disease is coming — he just doesn’t know when. Click here to read the full article.
HSC NEWS
Champion of Hope
Our Champion of Hope Monthly donors make a difference each and every day. Click here to read our latest blog about one of our Champions, Janet, and her inspiration behind supporting the HD cause on a monthly basis.
GENETIC FAIRNESS
One Year on, Scientists Defend Canada’s Anti-Genetic Discrimination Law
Technology Network – May 23, 2018
For people with a family history of genetic disease, genome sequencing is an opportunity to receive valuable information that could impact not only their lives, but the lives of their children and grandchildren. Click here to read the full article.
RESEARCH NEWS
How the gene behind Huntington’s disease could be neutralized
Nature – May 30, 2018
In September 2014, at a meeting of the European Huntington’s Disease Network, Sarah Tabrizi announced the launch of a drug trial. Tabrizi, a neurologist and director of the University College London Huntington’s Disease Centre, would be working with Ionis Pharmaceuticals of Carlsbad, California, to test the safety and tolerability of a drug candidate called IONIS-HTTRx in people for the first time. The drug had been designed to reduce the amount of protein being made by the gene that causes Huntington’s disease. Click here to read the full article.
Huntington’s disease: 4 big questions
Nature – May 30, 2018
Although potential treatments are now entering the pipeline, the molecular cause and progression of Huntington’s disease continue to elude researchers. Click here to read the four big questions about HD and their answers.
Roche Global HD Community Letter
HSC Website – June 7, 2018
June update: getting to know Roche & Genentech, RG6042 (formerly known as IONIS-HTTRx) Huntington’s disease development programme. Click here to read the full community letter.
 |
 |
 |
 |