Volume 11, Issue 1
NEWS
Jake Dowell’s Happiness Tempered by Sobering Reality
The Hockey News, December 14, 2015
If you’re Jake Dowell of the Rockford Ice Hogs, you take your triumphs where you can get them these days. And for Dowell, recently finding out that he is not carrying the gene for Huntington disease is indeed cause for celebration. To read the full article about Dowell’s results, click here.
How a Genetic Test Changed my Life
Good Housekeeping – December 19, 2015
As a teen, Lauren Holder learned that a cruel and fatal disease was stalking her family — and that she might have inherited the gene for it from her dad. Now 30, she shares her journey to discover the truth. Read the full story here.
Two Guys, Four Wheels and One Cause
Windsor Star – January 4, 2016
For two local men, a bucket list dream to cycle across Canada has become an emotional journey in finding a meaningful treatment and raising funds for Huntington disease. Read the full story here.
HDYO Land Launches!
Huntington’s Disease Youth Organization – December 31, 2015
HDYO’s brand new children’s educational project, HDYO Land, launches today, with funding from HSC! Filling a gap in resources for children to learn about HD in an appropriate way. Read more about this HSC-funded project, here. To visit HDYO Land, click here.
Canadians are now eligable for up to 6 months of compassionate care benefits
January 5, 2016
In a statement Minister of Employment, Workforce Development and Labour MaryAnn Mihychuk announced effective January 3, 2016, care givers would be eligible for up to 26 weeks of compassionate care benefits, up from six weeks. HSC, as a member of NHCC and HCCC coalitions, helped to advocate for this at the federal level. Read more here. Click here to learn more about the benefits from Service Canada.
Amaryllis Photo Festival – You could win a Tim Hortons Gift Card!
Submit your Amaryllis photos and be entered to win a Tim Hortons Gift Card. All photos received by the end of January are eligible.
We would love to see photos of you and your children (or your cats and dogs) with your blooming Amaryllis! Please send them, indicating your permission, to us at amaryllis@huntingtonsociety.ca or post them on social media with the hashtag #hscamaryllis.
To learn more please click here.
RESEARCH NEWS
A key Huntington disease trial remedy gets Orphan Drug Designation, as yet another young life is cut short
At Risk for Huntington’s Disease Blog – January 8, 2016
Ionis Pharmaceuticals, Inc. (formerly Isis Pharmaceuticals) has achieved another milestone in its search for a treatment for Huntington disease: on January 5 the company announced that the U.S. Food and Drug Administration (FDA) granted Orphan Drug Designation for its gene-silencing drug, currently under study in a clinical trial in Europe and Canada. Read the full story here.
Looking Past the Spin: Results from a Clinical Trial of Cysteamine
HDBuzz – December 18, 2015
In early December, Raptor Pharmaceuticals released clinical trial results evaluating a drug called cysteamine in Huntington disease. News headlines about this trial are heavy on media spin, and so HDBuzz is here to break down what these new results really mean for the HD community. To read more, click here.
A Recycled Drug Gives us New Insight in to HD
HDBuzz – December 15, 2015
Researchers have found a connection between HD and an energy-regulating protein called PPAR-delta. Giving PPAR-delta a boost with an existing drug was protective in HD cells and mice, but we’ll likely need to research and test it further before it can go to the HD clinic. Click here to read more.
HSC Staff Changes
The Huntington Society of Canada is pleased to welcome Sobia Khan who will be filling as Communications Coordinator for Christina Steinmann as she takes her maternity leave. Sobia comes to us with experience as a Communications and Development Assistant at the Faculty of Information at the University of Toronto and, more recently, as a copywriter for the Daughters for Life Foundation and as a Licensed Travel Insurance Advisor for RBC Insurance. Please help Christina and I welcome Sobia. Her new email address will be skhan@huntingtonsociety.ca. Sobia will address all of your communications needs and is located at the Kitchener office.
