April 23-29, 2017 is National Volunteer Week! To thank our dedicated HSC volunteers, we are highlighting the work of some of our volunteers who have truly gone the extra mile. Thank you to all of our amazing volunteers across Canada for your hard work and dedication!
A Thank You Message from our CEO:
“The Huntington Society of Canada could never achieve what we do without the steadfast dedication of our volunteers. From leadership strategic decision making, to program development, to event management, to administrative support, our volunteer community extends our capacity, enabling us to achieve much more than we normally could.
We appreciate our volunteers every minute of every day and during this Volunteer week of 2017, I want to remind our volunteer community how much we truly value your dedication and thank you for knowing, and believing, that together we make the difference. We know your time is precious and skills are plenty. We feel privileged that you choose to spend them on us.”
Chief Executive Officer, Huntington Society of Canada
“Volunteers do not necessarily have the time; they just have the heart.”
John and Brynne
Like father, like daughter
Brush your teeth. Comb your hair. Volunteer. Brynne Stainsby grew up in a house where giving back to the community was just expected. That isn’t surprising when you’ve got a dad like John. “In every aspect of his life, he was such an example of putting others first,” says Brynne. “That was always what I saw.”
After his mom was diagnosed with Huntington’s disease (HD) in the early nineties, John wasted no time getting involved with the Huntington Society of Canada’s Niagara, Ontario chapter. And when he also tested gene-positive in 1994 for the fatal, degenerative brain disease, those efforts became all the more important.
Inspired by the strength and camaraderie he saw in the HD community, John became a stalwart of the organization, spearheading fundraisers, serving as the chapter’s president and spending several years on HSC’s national board. “That’s the way I like to deal with it: knowing what’s happening and being involved and helping out where I can,” he says.
Brynne in turn became the founding president of Young People Affected by HD (YPAHD), the Society’s national youth chapter. Nearly a decade later, the group has grown by leaps and bounds, hosting events across the country and offering peer support. Meanwhile, Brynne has also been a fearless champion for genetic fairness, sharing her story to ensure all Canadians have legal protection from discrimination.
Individually, John and Brynne have made impressive contributions. But just watch what happens when you put them together. For the past 10 years, the father-daughter duo have run half-marathons together, raising thousands of dollars for the Huntington’s cause.
Brynne admits there have been plenty of times she’s finished a race exhausted, sore and ready to hang up her running shoes. But then she reminds herself how lucky she is. “I get to run, and that’s a pretty huge gift,” she says. “And I get to run with my dad, and that’s a bigger gift.”
From bicycles to the boardroom table
Heath Sterling was fresh out of high school when his mom was diagnosed with Huntington disease (HD) — a fatal, inherited neurodegenerative disease. “It was a big shock to our family because we really had no idea that Huntington’s was in our family,” he recalls. “My natural instinct was to just get as involved as I can.”
So the teenager rallied some friends and signed up for a triathlon to raise money for the HD cause. That effort got him on the front page of the Peterborough Examiner’s sports page — and kicked off more than two decades of contributions as a volunteer.
Heath helped organize a successful HD Indy Go-Kart Challenge fundraiser. He signed up for clinical trials. He became the president of the Huntington Society of Canada’s Toronto chapter and served on the national board of directors for three years. The Toronto Sports Getaway Raffle consistently raises more than $10,000 for the Society each year, and he has put his technology savvy to work for the organization, improving their website.
Meanwhile, as one of the spokespeople in the Society’s Public Service Announcement, he’s raising awareness about the disease that affects families like his from coast to coast. “I’m happy to do as much as I can to help the cause,” he says.
Today, Heath has moved back to his hometown to be closer to his family as his mom’s HD progresses. He’s also taken on the role of president for the Peterborough chapter, helping organize an annual Walk to Cure HD event in May and prepare to host an HD Symposium this fall.
As a busy father of two young children, Heath doesn’t have as much time as he once did to volunteer. That’s why he’s recruiting a new generation of passionate volunteers to the chapter, introducing them to the joys of contributing to a great cause. “To see the younger folks get involved has been super-rewarding,” he says.
Leaving a permanent mark
When Hedley steps into a tattoo parlour, finding an empty patch of skin can be tricky. With more than 40 tattoos adorning his legs, arms, back and chest, real estate for new ink is running out.
But as the organizer of Tats for a Cure — a fundraiser that trades donations to the Huntington Society of Canada (HSC) for tattoos — the B.C.-based volunteer will always find room for one more. “Oh yeah, I’ll find a spot,” he says.
The annual event draws crowds to Victoria’s Incendiary Tattoos and raises thousands of dollars each year. Inside, the company’s artists volunteer their time and talent, inking permanent amaryllis flowers onto the brave supporters (or offering temporary tattoos for the kids and needle-shy). Outside, Hedley keeps those waiting in line entertained with a trademark joke or one-liner.
Volunteering helped Hedley bounce back after he was diagnosed with Huntington disease. And with both his children having a 50/50 chance of inheriting the fatal neurological disorder, the stakes couldn’t be higher or more personal. “Knowing that my kids have a chance of getting it and wanting to get a cure so bad for them I guess is what drives me,” he says.
As the fundraising coordinator for the local HSC chapter, Hedley has also organized an Indy Go-Kart Challenge that raised $20,000. Meanwhile, adding the Society’s logo and web address to the back of his Toyota Tacoma made every drive around the block an opportunity to spread the word. What’s more, when it came time to sell the truck, he managed to convince the new owner from Kelowna to keep the tailgate emblazoned.
For Hedley, volunteering helps him grow as a person and lets him go home at the end of the day feeling good. And like the ink in his arm, his efforts create a lasting impact for his children, for HSC and for the entire HD community. As for folks who are thinking about volunteering, his advice is simple: “Pick something that’s close to your heart, and get out and do it,” he says.