January 26, 2016
Less than two years ago, we found out my mother has Huntington disease (HD). It was a huge surprise — we had no idea that it ran in the family. At the time, I was pregnant with my first child, which made the news even more devastating.
After my son was born, I decided to face things head on by becoming informed and involved. This decision is my way of making the best of the situation. In addition to volunteering for the Huntington disease community, I started doing a lot of research into clinical trials. We were thrilled to get my mother enrolled in the PRIDE-HD trial, which is looking at the effect of pridopidine on HD.
It’s such an exciting time, with so many opportunities for families to get involved in testing potential treatments. I’m currently working with our local Huntington Resource Centre director to have some researchers speak about clinical trials and observational studies at an event here in Ottawa.
That opportunity led me to be recommended to help at the national level to create an online map of clinical trials across Canada. This tool gives families a central place where they can find out which trials are happening, where they are taking place, who is eligible to participate and, most importantly, who to talk to obtain information about the trial.
Getting involved in that project opened my eyes to the enormous amount of work the Huntington Society is doing to promote clinical trials in Canada and help families make informed decisions about participating. I feel blessed to be able to contribute to it.
Although there is a lot about HD that we can’t change, volunteering gives me a greater sense of control over a difficult situation. Being able to focus on doing something positive has brought me a lot of joy and a sense of purpose.
Margaret Mead once said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” For me, that really sums it up.