Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease) is a progressive neuro-muscular disease where nerve cells die off and leave voluntary muscles paralyzed. There is currently no cure or treatment for the disease.
The Perreault family, Gates and Joanne, know the impact of this disease all too well as their 33-year-old son, Jefferey, was diagnosed with ALS in June of 2014. They have partenered with Michel Leroux and Josée Belanger-Leroux of Belanger Ford Lincoln Centre in Chelmsford to raise funds and awareness for a foundation Jeffrey founded.
That foundation, Adaptive Canuck ALS Foundation, aims to further research into stem cell treatments for ALS.
“The reason he picked the name adaptive is because everyone living with ALS has to adapt to different situations as they go through this,” said Gates. “Canuck is because we want to keep this as a Canadian foundation.”
At present there are no clinical human trials for stem cells in Canada and the foundation is geared towards changing that, with funds raised going to the Toronto Western Research Institute (http://www.uhnres.utoronto.ca/institutes/twri/), a major teaching hospital of the University of Toronto.
With no known treatment or cure, ALS patients are left with little more to do than sit and wait for the disease to take over their bodies.
Michel Leroux, 53, is learning that now. He was just diagnosed with ALS a month ago.
“They don't give you a hope,” said Leroux. "The first time I heard that I had ALS, I shut down. There's a feeling of emptiness."
Michel said while supports and services are available from ALS Canada, which are necessary and appreciated, what those living with the disease really want is a cure.
"It wasn't like they were being negative," he told NorthernLife.ca. "What ALS Canada is doing is they try to make you feel at ease. They're very nice and they offer services to modify your home or get you a wheelchair and things like that, but these are Bandaid solutions and not a cure — so that's where Jeff (Perreault's) foundation comes in.”
Jeffrey's parents explained their son's ALS has progressed beyond the point stem cell treatment may be effective, but he is determined to open the door for patients in the future.
Perreault's mother, Joanne, hopes her son's foundation will create more awareness around the disease and bring finding a cure to the forefront year round.
“Everyone knows about the Ice Bucket Challenge, but that's only during the month of August,” said Joanne. “There are other things like the Canadian Cancer Society and Heart and Stroke Foundation that are raising money year round and you hear about them all year and that's what we're hoping to have happen with this for ALS.”
Joanne held a fundraiser in Dowling where close to 100 people donated, and the Perreaults quickly learned ALS impacts more people than one might think.
“Of the 97 people who donated, we talked to at least 15 people who knew someone with ALS, but everyone seems to suffer silence,” said Gates. “The supports are out there to make people comfortable, but there's no fight.”
The two families are working to change that and raise money to further stem cell research treatments for the disease.
The Adaptive Canuck Foundation will be hosting a golf tournament fundraiser on Sept. 20 at Forest Ridge Golf & Country Club. Jeffrey's GoFundMe page has raised nearly $8,000 in one month on its way to a goal of $95,000.
To learn more about the foundation visit ALSCanuck.org.
If you would like to make a contribution to the foundation, visit the GoFundMe page.
Stem cell research
The Stem Cell Foundation of Canada says scientists are studying how stem cells could be used to treat ALS, using the cells' "unparalleled regenerative capacity ... to replenish the stores of motor neurons as well as other needed cell populations to protect motor neurons and to restore the microenvironment in the brain and spinal cord."
That said, the foundation reports no stem cell therapy has been approved in either Canada or the U.S. for the treatment of ALS. It also cautions patients about companies offering fee-based stem cell treatments for the disease.
"Patients who are researching their options may come across companies with Web sites or materials that say otherwise and offer fee-based stem cell treatments for curing this disease." the foundation states on its website. "Many of these claims are not supported by sound scientific evidence."
On its website, ALS Canada says it does not fund any ALS research using human embryonic stem cells, nor has it ever funded research involving human embryonic stem cells.
