Like many people, Denis and his husband Tom were familiar with the Ice Bucket Challenge that became a social media phenomenon in the summer of 2014 – but they never imagined they would one day have a personal motivation to participate.

That all changed in 2015 when Denis was diagnosed with ALS. From that point onward, the future he and Tom had planned together was irrevocably altered. Denis’s diagnosis sent the couple into a period of depression, but they were determined to overcome it and make the most of the time they had left.

They also became motivated to do their part: 2016 was the couple’s first time participating in the Ice Bucket Challenge. They began by setting up a page on the ALS Canada fundraising site, and invited friends, family and coworkers to make a small donation.

When they first started their fundraising efforts, Denis and Tom didn’t know what goal to set for themselves. They decided on $5,000, hoping for the best, and were surprised and thrilled to achieve their goal within 24 hours.

So they decided to keep going. “Denis doesn’t do anything halfway,” explains Tom with a smile. Their final fundraising tally was $10,882.

Moving forward, one of the priorities on Denis’ “Bucket List” is to help make ALS a treatable, not terminal, disease. In doing this, both he and Tom invite everyone to join them in this year’s Ice Bucket Challenge.

“To me, the Ice Bucket Challenge represents so much,” he says. “The social media phenomenon put ALS on the map and gave instant global awareness to the disease. The $220 million raised globally gave the biggest boost to ALS research all over the world,” he continues. “Thanks to this, there are now more researchers working to solve the ALS puzzle than ever before.”

The money raised by the Ice Bucket Challenge in 2014 enabled much more significant investment in research that is already starting to show promise. We cannot afford to lose momentum now.

“We, the 3,000 Canadians living with ALS, our friends & families and ALS Canada, we must all work together to keep the Ice Bucket Challenge alive and strong,” says Denis. “We need to raise money for ALS Research to support people living with ALS. “One day, ALS research will give us a treatment, something to slow down the progression of the disease, or maybe even a cure! There has been more progress in the past five years than in the previous century.”

Denis’ message to ALS researchers in Canada is one of gratitude and motivation. “Thank you for fighting with us,” he says. “Thank you for your hard work and courage in taking on such a challenge. You have my support – my new mission in life is to raise money for your research.”

Living with ALS is not easy and every day presents new challenges. But Denis and Tom have learned to approach life in a new way, to live in the moment, and to make every moment meaningful. Denis encourages researchers to keep in contact with people like him who are living with ALS, stressing the importance of seeing first-hand the physical and emotional devastation of the disease and the hope their research represents.

“Just a smile from one of us will help you stay motivated and eager to continue to do what you are doing so well,” he says.

Denis also encourages everyone to register for the ALS Canada Virtual Research Forum that’s coming up on August 9 and 10. “You might not understand everything,” he says, “but by attending these webinars you will realize that you’re not alone and that there are many people working tirelessly to find a treatment for ALS.”

The ALS Canada Virtual Research Forum will be taking place on August 9 and 10 from 11 a.m. to 5 p.m. Eastern Time. The forum is free and open to anyone interested in learning more about ALS research currently underway and therapies in development. Hosted by Dr. David Taylor, VP Research at ALS Canada, the forum will feature more than 20 speakers and panelists over two days. Advance registration is recommended as spots are limited.

Learn more and register here.

Posted in: Research