It was Noella LeBlanc’s father who was diagnosed with ALS, but she believes the disease was responsible for her mother’s death, too.
“The two of them had been joined at the hip for nearly 50 years, raising their children and enjoying travel in their retirement years” Noella says of her parents before the diagnosis. “My mother’s wings were clipped. The emotional strain on her was too much and she also lived in fear of financial ruin as she watched the money she and my dad had so carefully put away all those years disappear as the costs associated with caring for him mounted.”
The devastating impact of ALS on caregivers is something Noella cares deeply about. Her mother Lorraine, who was in her 70s, had cared for husband Arthur, a proud World War II veteran in their apartment for a year and half when Arthur insisted on moving because he wanted to relieve some of the burden on her and on his four adult children who were sharing responsibility for his care. Lorraine died of a heart attack in 2000 just two weeks after Arthur moved into a nursing home. Her father passed away in 2003.
It wasn’t until a few years after losing her parents that Noella felt ready to 
become involved with ALS Canada, first as a participant in the WALK for ALS in Moncton where she had returned temporarily to help care for Arthur, then as a volunteer media relations coordinator for the Ottawa WALK for ALS, and most recently, as a member of the ALS Canada Board of Directors.
Noella admits it has been “a very emotional journey,” but she says that giving again through volunteering and fundraising are helping her heal and giving her a sense of renewed purpose while honouring both her parents who were so profoundly affected by ALS.
Sadly, her father wasn’t the last person Noella knew to be diagnosed with ALS. . In the years since her father’s passing, she supported an office colleague who was facing ALS and later died of the disease in 2014. She remembers her colleague’s journey to obtain a diagnosis. It was a familiar one to Noella and she feared what was ahead.
In order to bring hope, Noella believes ALS research must remain a top priority for ALS Canada. “Without funding, there is no research. Without research there will be no treatments and no cure,” says Noella. She sees progress in the past 20 years since her father was diagnosed, but she also laments the fact that there is still no cure.
As ALS Awareness Month, June is particularly important to Noella. For the 3,000 people living with ALS today, their family, friends and colleagues, and for everyone who has been touched by the disease, “the big push at this time of year can have a significant impact on the amount of money raised and the level of awareness.”
By channeling her energy to keep hope alive for anyone living with ALS, Noella hopes she will also inspire other caregivers to give again by contributing their money or their time to stop ALS from taking so much.
It’s the hope you give that ALS can’t take away. Help keep hope alive. Give today.