It wasn’t until her own diagnosis that Jackie learned ALS can be passed on through generations. Jackie Pasch, 55, was diagnosed with familial ALS almost a year ago. Shortly after, she lost the use of her left arm and developed difficulty breathing necessitating the use of a BiPAP machine at night to help her breathe while lying down. Now she also uses the machine during the day when breathing on her own becomes too much of a challenge.

Jackie says her world has turned upside down. “I’m very grateful for every day I wake up and I can still walk,” she says, “but it’s hard to stay positive when no one can predict what will happen next.”

Jackie (left) and her family on New Years Eve, 2018
Jackie (left) and her family on New Years Eve, 2018

Living with the knowledge that ALS runs in the family is an extra burden. In 2006, Jackie’s paternal uncle died of ALS in his late 60’s, followed by his daughter 11 years later. But at the time, Jackie was unaware they were among the small percentage – approximately 5 to 10 per cent – of ALS patients whose disease is hereditary. That information prompted her daughter and one of Jackie’s siblings to opt for genetic testing. Testable variations of the disease are an even smaller subset of the small percentage, with testing only available to families in which a family member has been affected by the disease and in which a genetic mutation has been clearly identified. It’s not a choice every member of the family embraces and Jackie understands the risks, although she is very relieved to know that her daughter does not carry the precursor gene for the disease. For Jackie, there is only one thing that matters: “I hope I’m the only one,” she says. “I wouldn’t wish this on anyone else.”

With six siblings, five children and nine grandchildren, “family has always been number one,” she says. Her husband, Bill, is on leave from work to care for her full-time. Jackie also receives help from her daughters who live nearby. She feels blessed. When she thinks about people in her support group living with ALS on their own, she is astounded by their strength when she considers how they manage the day-to-day hurdles. “It would be so scary to go through this alone,” she says. “I couldn’t do it.”

Jackie and her three youngest daughters
Jackie and her three youngest daughters

Participating in the Walk to End ALS in London is important for Jackie. “I didn’t know much about ALS even though I had family members who had died of it,” she says. “We need to raise awareness and educate people because I don’t think a lot of people out there really understand this disease.”

Jackie also wants families to know that ALS Canada is filling an important gap to provide critical support services for people and families living with ALS in Ontario. She has already received loaned equipment including a wheelchair, communication devices that help her bank her own voice while she can still speak, and two BiPAP machines that provide breathing assistance. Her Regional Manager, Charlene, has connected her to various resources including local ALS Canada support groups and links to physiotherapists and occupational therapists who make home visits so Jackie can have a better quality of life.

Investing in leading ALS research is also at the top of Jackie’s list of priorities. “There’s no reason why we can’t find a cure,” she says. “It’s just a question of money. We have to raise a lot more money so the research can go on.”


The Walk to End ALS takes place in over 90 communities across Canada until September 2019. Register or donate to a Walk to End ALS near you at www.walktoendals.ca.

Your fundraising efforts and generous donations support the best ALS research in the country and enable ALS Canada to provide community-based support to people and families living with the disease in Ontario. Donations for all Walk to End ALS events are being accepted until December 31, 2019.

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