Time to walk and find a cure
The average person living with ALS will require $70,000 worth of mobility, breathing, communication, and other assistive equipment to remain independent, safe, and live a decent quality of life, says Kimberly Carter, president and CEO of the ALS Society of New Brunswick and Nova Scotia.
ALS (also known as Motor Neuron Disease, Lou Gehrig’s Disease, or Amyotrophic Lateral Sclerosis) is a disease where motor neurons degenerate and eventually die. The society’s website explains that as ALS progresses the person afflicted becomes unable to walk, talk or breathe on their own. The average life expectancy is two to five years after diagnosis, although there are people in New Brunswick and Nova Scotia who have lived longer than 10 years.
A group of volunteers in the Berwick area are working hard to combat the disease.
Delcia Filippone is this year’s co-ordinator of the Annapolis Valley Walk happening at Berwick’s Centennial Park on Sept. 25.
Filippone knows first-hand the effects of ALS as her mother-inlaw, Joyce, was diagnosed with the disease 15 years ago. Joyce started treatments and remained strong and positive, living another 12 years, although she was only given two to five years.
“It was so heart wrenching to see her go from a vibrant woman in her 70s,” says Filippone, “to needing constant care in everyday things.”
By the third year, Joyce couldn’t do the things she loved and had to give them up with only her computer and her books to pass the time away, says Filippone.
The Filippone family kept positive with her but say it was heart- breaking to see her decline front of them.
“She went from a healthy woman enjoying life to her final days of lying in a bed, unable to move, unable to speak, not even able to blink so we could know she heard us,” says Filippone.
Filippone and her family started doing the ALS Walk when Joyce was first diagnosed, and since then, have missed very few. They now walk in her memory, with a team called Re-Joyce.
“I know that me taking on this role as the Valley walk co-ordinator would make her in proud,” says Filippone.
Carter says 60 per cent of funds raised from the walk support their equipment loan program for all their clients in New Brunswick and Nova Scotia. In an average year, the society loans 600 pieces of equipment valued at $800 to 130 families. There is no charge for the service. The remaining 40 per cent of proceeds from the walk support research into a treatment to slow progression of the disease and to learn more about the cause and to find a cure for ALS.
This year’s walk is on Sunday, Sept. 25 at the Centennial Park in Berwick. Registration begins at 10 a.m. with the walk starting at 11 a.m. There will be a barbecue, entertainment and plenty of activities for all ages.
“We pray,” says Filippone, “with funds raised from these walks we can find a cure so that other families never have to deal with losing a loved one to this horrific disease.”