There was a time when I knew nothing about Huntington disease (HD).
I was in my early 20s, had just graduated from university, and didn’t really know what I wanted to do with my life. I ended up taking an administrative job at the Centre for Huntington Disease in Vancouver, and that’s when my eyes were opened.
I soon volunteered to help run the therapeutic retreat for the Huntington Resource Centre. That retreat changed my life. For those who have never met anyone with HD it’s hard to put into words what a profound experience it was. I quickly realized I wanted to make this my life’s work. I was so inspired I chose to redirect my entire career – I went back to school and earned my Masters in Counselling Psychology so I could help people with HD in more meaningful ways.
When the participants and their families arrived many were fearful and feeling alone, but when they left they felt connected and hopeful. The lives of those people changed dramatically…because of you!
In the years since then, I’ve come to appreciate the critical role that the Huntington Society of Canada plays, and it’s your support and encouragement that makes HSC’s work possible. From the ongoing research to the wide range of critical services for people living with HD – for this, I’m grateful to you. It’s also why it is so very important for HSC to continue—every single day—to keep up efforts to learn more about this devastating disease, and to eventually find a way to prevent or treat HD.
Please help this important work continue. Click here to donate now.
Your generous support has already led to new discoveries about Huntington disease and has helped so many who face the crushing burden of day to day life with HD. Your generosity is helping prove we can help maximize the quality of life for people living with HD.
As I read through the most recent issue of Horizon, and the press releases from HSC that arrive in my inbox, it’s become very clear to me: we’ve never been closer to unlocking the hidden secrets of this devastating disease. You and I are blessed in this country with some of the best HD researchers in the world. I’m not a scientist, so I can’t begin to fully understand all of the work they’re doing, but I can tell you that their work brings hope to families and individuals living with the slow but fatal progress of this disease.
Thanks to your support, researchers will soon be moving outside of their labs and testing potential HD treatments on humans. This is incredibly exciting to all of us who work directly with the individuals and families affected by HD. As early as next year, you’ll see clinical trials beginning in Canada, and that this could result in a drug being available sometime in the next five or six years. By attacking the disease near its genetic roots, this drug, called ISIS-HTTRx, could reduce, partly reverse, and even prevent the symptoms of Huntington’s.
But it’s not just research that makes me optimistic about the future. Thanks to you, HSC continues to expand the wide range of critical services it does for people living with Huntington disease. For example, the fall issue of Horizon talks about the safe space that HSC is creating with young people whose parents have HD. HSC has recently established a Youth Mentorship Program that’s unique in the world. As one of the parents says,
“I have a very open relationship with my child but I will never fully understand what my child is going through and their feelings.”
“I am relieved my child can share their feelings with someone who truly understands. I feel so much better knowing my child has someone comfortable to talk to. I highly recommend parents look into this program.”
So you can see why I am optimistic about the future, and why I believe that with the help of donors and friends, we can win against Huntington disease.You, as one of our generous supporters, are an important part of a wonderful community of people who are dedicated and passionate about easing pain and suffering in the face of tremendous obstacles.
I am constantly amazed—and inspired—by the bravery and dignity shown by those who face this reality. Please know that it is because of your ongoing support that they can face this disease head on. I urge you to send your special gift to the Huntington Society of Canada now. The answers will not come immediately, but we must not be deterred. Research will bring solutions in the future, and our helping hands will bring comfort, hope and a better quality of life—today.
With gratitude,
Carly Power, Certified Clinical Counsellor