I have seen how much devastation Huntington disease can create within a family.
My late husband, who carried the gene, had 16 siblings. I’ve seen many of them pass away.
That’s why I choose to be involved and raise awareness about Huntington disease.
Now, I see the next generation developing symptoms. I’ve been helping to take care of a nephew in the later stages of HD and my own daughter has tested positive for the gene.
A few years ago, I set my sights on creating a local HSC Chapter in Ontario’s Durham region to raise awareness, educate healthcare professionals and connect families dealing with the disease.
When you feel like you’re the only one that suffers from something, it can be pretty devastating and isolating. But when you feel like you’ve got somebody else that you can relate to, that’s in the same boat, I think it gives you strength and some motivation. And really, in the end, it gives you hope.
Our first undertaking as a group was to organize a fundraising walk in 2014. It attracted 250 people, raising $21,000 and a hefty dose of excitement among all the participants.
This year, I want to double those numbers. I’ve already got several mayors and councillors in the region signed up, plus a couple of local celebrities.
Volunteering, raising awareness and fundraising are very important to me. The rewards far outweigh the effort. The people you meet, the people you educate and the people you help provide incredible strength. That strength keeps me motivated.
So when I dream, I do dream big. What the heck – if you’re going to do it, you might as well go all the way, right?