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Chapter Champions

Across Canada, HSC has 21 Chapters and 11 active areas. These Chapters range from small to large groups and they plan several awareness and fundraising events throughout the year.

One of these groups is the Niagara Chapter, located in Niagara Falls, Ontario. This Chapter was created over 40 years ago and fundraises annually through over 10 events.

Gail DeKoning and her husband, Neil at one of their their annual book sales

“The Chapter is filled with dedicated and committed members who are supporting our local efforts,” says John Stainsby, Niagara Chapter President. “Whether it is time spent organizing events or helping out one event day, each contribution is valuable.”

These events are all planned by volunteer members in their spare time. These events include book sales, volleyball tournaments, trivia nights and more!

“The Niagara Chapter holds multiple fundraising events to help raise funds to find a cure for HD,” says Gail DeKoning, Niagara Chapter Secretary and organizer of the book sales. “These events are more than just fundraising because they get our members and families out to socialize as well so that hopefully, at least for a little while, they forget about how awful this disease is and just have some fun.”

For many members, joining their local Chapter starts as a way to meet and talk with people in their community who are going through similar situations in their HD journey. And many members are recruited from Gail’s book sales.

“My sister died of HD in 2006 and my brother was diagnosed the year after,” says Marg Allan, Niagara Chapter member who volunteers at several of the group’s events. “I had no knowledge of HD before my sister died. I stopped at a book sale one time and Gail had suggested that I volunteer. That was 12 years ago and I haven’t stopped.”

“I met Gail at one of her book sales and we exchanged emails to keep in touch, just so I had someone to talk to,” says Debbie Baker, Niagara Chapter member and organizer of several events including the Trivia Night.

But the fundraising bug eventually hits the members and they spring into event action.

Gail, John and other Niagara Chapter volunteers at Golfapalooza.

“I started thinking of different fundraising events, some good and some not so good,” laughs Debbie. “[Joining the Chapter] was what I needed. I can’t sit back and let this take over my family. I needed to do the only thing I could to help.”

As Chapter members, Debbie and Marg try to think of new fundraiser ideas, help with the existing annual fundraisers, contact businesses for prize donations and spread the word about their events.

“Sometimes it means being on your feet for a long time, seeing the devastating effects of HD in community members and taking your evenings,” says Marg. “But knowing that I am helping in some way for them to eventually find a cure motivates me. We aren’t a big Chapter, but we do our part.”

Debbie agrees, “It can be a lot of work but I know that the work is so worth it. Every little bit all adds up to help put an end to HD.”

At HSC, we are lucky to have Chapters full of dedicated volunteers like Niagara!

National Volunteer Week is April 15-21. We are taking the time to celebrate and thank all of our dedicated volunteers in the HD community! We appreciate the contributions of time and effort from all of our incredible volunteers.

Click here to read more volunteer profiles.

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