Jennifer Curnew was driving to dinner with friends when her mom called to deliver the news that her beloved father, Walter, had been diagnosed with ALS.
“I was devastated,” Curnew says. “I just didn’t even know what to do or how to deal with it. I just couldn’t believe this was happening to my dad and I felt so helpless.”
Amyotrophic lateral sclerosis (ALS,) also known as Lou Gehrig’s disease, is debilitating, destroying motor neurons responsible for sending messages to your muscles. A progressive, fatal disease, it hinders a person’s ability to walk, talk and eventually breathe on their own. In 90 per cent of cases, ALS occurs randomly in the general population and there is no cure. There are approximately 3,000 Canadians living with ALS and 80 per cent will die within three to five years from the time of diagnosis.
Curnew, a pharmacist in Rothesay, N.B., felt frustrated by the diagnosis.
“I’m used to helping people, trying to solve problems and other than being supportive and being there, there was nothing I could do for him. I never felt more frustrated in my entire life.”
She decided to take action and join the ALS Society as a volunteer board member. Curnew is also this year’s ALS Walk Strong ambassador.
“My dad is one of seven kids and always kind of the heart of the family,” Curnew says. “He’s always been a worker; working with his hands, helping everyone … and all of a sudden he started to get a little more clumsy … and we didn’t know what was going on. Certainly wasn’t thinking anything this serious.”
The ALS Society of New Brunswick and Nova Scotia’s Walk Strong event is the non-profit’s biggest annual fundraiser. The organization does not receive government funding and relies solely on the generosity of donors.
The virtual and in-person event helps to raise funds and awareness of ALS and to help the ALS Society of New Brunswick and Nova Scotia support those living with the disease. There are several walks taking place in both provinces in June. Participants can create a team, join an existing team or simply donate whatever they can to help Atlantic Canadians living with ALS.
Donations help the ALS Society provide free equipment for those living with the disease — equipment that can reach in the thousands of dollars and is not always covered by insurance. It includes items like wheelchairs, lift beds, breathing machines and even iPads to help a patient communicate.
Curnew says this equipment is vital for improving the quality of life for those living with ALS and their families.
“Keeps them at home with their family, keeps them out of long-term care … and keeps them independent.”
Curnew says Walter is doing well and his ALS symptoms are slowly progressing but he is staying positive.
“All his extended family and friends are there to support him so he’s doing really well and we’re pleased with that,” she says.
The ALS Society’s motto is “families helping families” and it rings true for Curnew.
“It’s just a whole other member of your family, helping you just the way your family would.”
Global News is a proud sponsor of ALS Walk Strong. For more information on the ALS Society and this event, please visit the ALS Society of New Brunswick and Nova Scotia online.