The old adage “lighting doesn’t strike twice” usually applies to ALS as well. The fatal neuromuscular disease is hereditary in only five to 10 per cent of cases. Unfortunately, the Miedema family of Alliston is in this small percentage.
Marjorie Miedema lost her husband, Sam, to ALS eight years ago. His brother, Robert, sister, Klaaske, and a Dutch cousin have also lost their lives to the disease. Another cousin is currently living with ALS.
Since her husband’s diagnosis Miedema has been committed to increasing public awareness of the disease. She teaches courses about ALS and caregiving at the local hospice and also serves as a hospice volunteer, mainly to families coping with ALS. Miedema is also involved in several fundraising initiatives, the largest being the Alliston WALK for ALS, which she co-ordinated for five years.
“The walk gives us something concrete to do for a disease that often leaves us feeling powerless,” says Miedema “All of us who love or have loved a person with ALS share a common bond as we walk and talk together.”
Now in its ninth year, the WALK for ALS is the ALS Society of Ontario’s signature event and largest annual fundraiser. In 2008, more than 5,000 participants raised $1.15 million. Seventy per cent of the proceeds fund the province’s equipment and support services programs, while the remaining 30 per cent funds research towards a cure. In 2008, Alliston raised more than $26,000. Alliston is one of 28 locations across Ontario holding walks this year. Dozens of participants will gather at the Alliston Christian Reformed Church on June 6th at 8:30 a.m. to walk in honour or in memory of people living with the disease.
“The ALS Society of Ontario’s goal is to help ease the physical, emotional and financial burdens ALS creates,” says Maureen Sheahan, President & CEO, ALS Society of Ontario. “With the help of volunteers and supporters across the province, we’ve grown the WALK for ALS into our most successful and anticipated event. We ask the public to help us continue this success story in 2009.”
For more information, or to support the walk, visit www.walkforals.ca.
ALS, amyotrophic lateral sclerosis or Lou Gehrig’s disease, is a fatal and rapidly progressive neuromuscular disease affecting more than 1,000 Ontarians and their families. There is no cure or effective treatment. Eighty per cent of those affected die within two to five years of diagnosis. The ALS Society of Ontario is a non-profit organization committed to providing equipment and support services to increase quality of life and provide independence, dignity, hope and choice to people with ALS.
