That’s what my late husband Ralph and I wrote to local psychiatric hospitals. In our own family, we had experienced misinformation and confusion about HD. It was so frustrating. Our sense of wanting to do something grew, and our hope was that if we opened up, we might find others who needed help and could help us, too.
Right away, we heard from five families, and that became a core group of volunteers, our first board members, and lifelong friends. And really, that’s how the Huntington Society of Canada was born.
In the early years, with our young kids, we took a camper van across Canada, and as we drove, volunteers back home were putting free articles in church newsletters and community newspapers just ahead of us. We met many people who were just like us – feeling alone, desperate for information, and frustrated at every turn, just as we had felt.
It was then that I really began to understand the spirit of families affected by HD. You could see the relief wash over them when they would say, “You’ve had experience with this too? What worked for you and what can you suggest we try?” You could feel this overwhelming sense of “finally, someone we can talk to.”
It was wonderful that, after people felt heard and got something they needed, they would immediately say, “Now what can we do?”
Every conversation was open and honest. We did what we felt was right, we asked people for what they needed, and we were actively learning from their stories and experiences too.
Today, I still feel that same spirit in our community.
– Ariel Walker, Co-Founder of the Huntington Society of Canada
