A sister’s love: Pushing ALS research forward

In 2017, Linda Auger Morissette’s brother, Pierre, received an amyotrophic lateral sclerosis (ALS) diagnosis at the age of 52.

“This completely shocked my family,” she says. “My daughter, who views her uncle like a father, was devastated, as were my other two brothers.”

While upset by the news, this was not the first time Linda and her family would be touched by ALS, also known as Lou Gherig’s disease.

“The disease has taken so much away from him in such a short period of time,” explains Linda. “It has robbed him of his speech, his ability to make decisions, his autonomy and his dignity.”

“My father passed away from ALS a few years ago, and my eldest brother is also affected by the disease,” she explains. “ALS is truly heartbreaking, and we need to learn more about it to better help those who are suffering.”

ALS is a neurodegenerative disease that is highly heterogenous. This means that each individual’s experience with the disease will be different. Patients with ALS can have many different underlying causes, presentations, and prognoses where some patients may live with the disease for decades, while others decline rapidly.

In Pierre’s case, he has always been very athletic. He loves to play hockey, baseball, golf and was an avid cyclist. Unfortunately, since his ALS diagnosis, he is no longer able to lead the same active lifestyle.

“The disease has taken so much away from him in such a short period of time,” explains Linda. “It has robbed him of his speech, his ability to make decisions, his autonomy and his dignity.”

For this reason, Linda has made it her mission to help support researchers who are working tirelessly to unlock the mysteries of ALS. After learning about Brain Canada, a national non-profit organization that funds brain research, Linda decided to organize a fundraising walk, which took place in June in Saint-Basile-de-Portneuf, Quebec. Mobilizing an inspiring community of 150 donors and 36 walkers – dubbed The Perseids of Hope – Linda raised more than $6,500 in support of ALS research through Brain Canada.

“I really wanted to fundraise specifically for research that could fuel discoveries and lead to the next breakthrough in ALS,” she explains.

In 2021, Brain Canada invested more than $27.5 million, 95% of the organization’s funds, in innovative research poised to contribute to major advancements across disciplines.  As a national convener and facilitator, Brain Canada works with partners from coast to coast to bring together the brightest minds and best ideas to better prevent, diagnose, treat and cure brain diseases and disorders. Thanks to a standing partnership with ALS Society of Canada, more than $24 million has been invested to date in leading-edge ALS research that will accelerate our understanding of ALS.

“There are approximately 3,000 Canadians currently living with ALS,” says Dr. Viviane Poupon, President and CEO at Brain Canada. “We are so grateful to Linda and her incredible network for supporting research that will help accelerate our understanding of ALS and pave the way for better outcomes for people like Pierre.”

“I have a lot of hope,” notes Linda. “Seeing how hard researchers are working to find answers for ALS is really encouraging. I have a lot of faith in the researchers, and I have a lot of faith in a better future for people living with ALS, their friends and their families.”

Learn more about the 2023 event.