At the tender age of 9, BJ Viau had to face his mother’s impending mortality — Debbie had been diagnosed with Huntington’s disease.
Unlike breast cancer, a foe that can be fought and defeated, Huntington’s may take its time, but the hereditary degenerative brain disorder virtually never loses.
However, that didn’t keep Viau, of Apple Valley, from starting a fundraiser for Huntington’s research that has now raised more than $500,000 in 15 years.
“People want to hide from Huntington’s and hide in a closet because there’s really nothing you can do about it,” Viau said. “But Debbie battled it like it was breast cancer, and said, ‘Hey family, I need your help.’ That’s how we ended up doing the Hoopathon — to fight for her.”
Saturday’s 15th edition of the Twin Cities Hoopathon, a free-throw shooting competition that will bring out more than 500 to the University of Minnesota Field House from 4 to 7 p.m., will be Viau’s last.
That’s because Debbie’s battle with Huntington’s came to an end last year.
And that has Viau, now 25 years old and working for a company that helps make medicine to combat a symptom of Huntington’s, saying it’s time to hand over the fundraising reins.
“There’s a committee of people who work on the event. Most are friends from St. Thomas who have picked up the event and ran with it — whether or not they’ll be able to keep it running, I’m not sure,” Viau said. “We’re just looking to put on the best event Saturday.”
Viau says his Hoopathon is one of the largest in the country, and for a taste of what to expect on Saturday, just check out the video above.
To learn more about how Viau got this event to blossom over the years, read on below.
How do you view the growth of your fundraiser over 15 years?
It’s great. To start off as a 10-year-old not knowing anything about Huntington’s, raising money, starting a family event with no experience, and beginning with 25 people and $1,000 and moving from an Apple Valley elementary school to the U of M to make it a Twin Cities event is great. I’ve been real proud of what it’s turned into the last 15 years.
How much were you initially hoping it would raise?
I think you definitely set expectations and I set the bar high every year. It’s hard to say the event has ever failed. If we raised $45,000, did we fail? No. Because it’s more than if we didn’t do anything.
How do you think it has impacted those with the disease?
We’re all about getting people in the gym. People with Huntington’s come to the event and it puts a smile on their face that afternoon.
How has this past year been after Debbie lost her battle with Huntington’s?
It’s been tough. To lose your mom at a young age is never easy. I had to watch my mom struggle with the disease for 15 years, mentally and physically. The day she passed, it was one of the saddest days of my life, but it was also a relief. We got to say goodbye to my mom. We told her how much we loved her, and she got to tell us how proud she is of us, and how much she loves us.
What’s been the highlight over the years?
I’d say 2009 was the most memorable. Debbie was still functional enough to shoot hoops, and I remember shooting with her through the day, even though it was a 5-foot-tall Huffy hoop, and she was in a wheelchair. To see her put in the energy to make some baskets, I’ll remember that moment forever.
What was the toughest part about organizing this annual event?
Fortunately, I can tell you stories of great people who step up to help, but there are so many people you have to ask, beg and claw to get their help with a cause like this. You find out who your real friends are.
With a 50-50 chance of developing Huntington’s – the disease doesn’t skip a generation — how does that change or not change your outlook on life?
That’s a question that ran through my brain every day of my life growing up, whether or not you’re going to get the disease. I got tested two years ago, and I found out that I do not. To sit there and almost be able to see your future, like not many people are able to do, it was extremely nerve-wracking.