The 2014 event season has turned out to be one of our finest seasons in many years!
A huge thank you to every event organizer, every volunteer, and every event participant in Chapters right across Canada.
Your collective efforts have raised the vital funds that are invested in the most promising research, that provide services to those affected by HD and that increase awareness of HD across the county.
Together, by planning or participating in an event or by sponsoring one of our 1000’s of participants from across Canada, we are changing the future of HD.
You are making a significant impact in your local area and across Canada. Together, we are changing the future of HD.
Take a moment to learn more of how your efforts are making a difference.
A Part of Our Family
I remember the first time I heard about the Huntington Society of Canada. It was September 1, 2006. Bob and I were sitting in a room at University Hospital in London, ON, getting the results from Bob’s blood test. I didn’t realize then how much our family would come to rely on HSC from that day forward.
Our Huntington Society of Canada Family Support Worker, Corey, has been a valuable part of our family. He was there for us just days after we decided it was time to tell our children. Katie was 10, Erik was 9 and Ty was just 4. They had an instant connection with him, and Ty even asked him to come over for Christmas dinner. Corey has seen our ups and downs over these last six years and watched the kids as they grow and their questions and concerns change. We could not imagine having to cope with Huntington disease (HD) without him.t our emotions to lead our best life with HD.”
For me, the support group meetings that Corey runs every month are invaluable. I have come to rely on our group for laughter, tears, support and friendship.
Our family’s first introduction to the broader Huntington’s community was in Toronto at the 2008 Casino Royale fundraising event. Katie was asked to be a guest speaker after my best friend Sarah sent the head office a copy of Katie’s Grade 5 speech about her dad and HD. Later that year she was asked again to speak at the HSC Conference in Charlottetown and then the World Congress on Huntington’s Disease in 2009. It has been great to see Katie develop through those experiences and contribute to the Huntington’s cause.
Finally, the HSC Retreat in Ontario is just amazing. Not only does it do wonders for Bob, but it allows me and the kids as caregivers, a much-needed break. Bob is able to go there, meet up with his HD friends and participate in supervised activities that would be difficult for him to do anywhere else. He gains back some of his lost freedom in a safe, supervised, beautiful setting. The kids and I are able to relax knowing that he is well taken care of and, most of all, he is enjoying himself. We can’t thank the HSC enough for that small break for all of us.
Living with Huntington’s isn’t easy, but we try to stay positive, help each other, and do our part to raise money and awareness. And when we need support, we feel good knowing that HSC is there for us.
“For a relatively small organization, HSC has targeted its research dollars in a place where they can have maximal impact. This is a credit to you, your scientific advisory staff and all the volunteers who made this fundraising possible.”
Dr. Jeff Carroll
Western Washington University
This past year, over 20 researchers, scientists and clinicians from across Canada have joined HSC and Canada’s Research-Based Pharmaceutical Companies (Rx&D) to further discuss the urgent need to ensure that we have research-ready clinics and clinical trial participants. Our goal is to ensure that future treatments get to Canadians as soon as possible.
Your energy, time and commitment enable HSC to play a leadership role in helping to create a comprehensive national HD clinical trial strategy. Engaging current HD clinicians across Canada and encouraging participation in HD clinical trial research will be the focus.
Not one, but two HSC-funded researchers made headlines in recent months, proving once again that your support is getting us ever-closer to life-changing treatments. In December, University of Western Ontario researcher, Dr. Stephen Ferguson, announced that blocking a specific glutamate receptor, mGluR5, in the brains of Huntington disease mice created a dramatic impact on motor symptoms. This NAVIGATOR-funded breakthrough could carve a path to treatments that reduce symptoms, not just in HD but also in Parkinson’s and other movement disorders. What makes this even more exciting is the fact that the FDA has already approved mGluR5-blocking drugs for other diseases, significantly speeding up the clinical trials process.
Meanwhile, McMaster University researcher, Dr. Ray Truant, was able to deliver big news of his own recently. Thanks, in part, to a NAVIGATOR grant from HSC, his team discovered that the huntingtin protein “bends” differently in a person with the HD mutation compared to someone without it. As a result, we now have a deeper understanding of how the disease works and, by extension, should be able to identify effective treatments. HSC funds excellent research and each year we receive many exemplary research proposals. Unfortunately, we are not in the economic position to fund all of the high-calibre, fundable proposals. That is why one of our key priorities going forward is to raise more money for research, so that no promising proposal goes unfunded.
Thank you for making a significant, positive impact on those affected by Huntington disease. None of the work we do could happen without active Chapters.