Walk for ALS treatment and research Saturday

If you ask Debi Kanerva, her aunt June Rumball is a remarkable woman who raised two children on her own and managed to put herself through nursing school.

When she retired from nursing, Rumball became a sales representative with Mary Kay Cosmetics where she excelled, and was eventually awarded the company's greatest honour – the Go-Give Award for giving back without expecting anything in return.

Today, Rumball is confined to her bed, or a wheelchair, and cannot breathe without the help of a bilevel positive airway pressure machine.

Five years ago she was diagnosed with amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's disease.

ALS is a motor neuron disease that causes muscle atrophy throughout the body. On average, when a person is diagnosed with the disease, they have three to five years to live. Some people make it to 10 years or beyond, in a near vegetative state, but those cases are rare.

ALS Canada has identified 1,100 people with the disease in Ontario. About 65 of them live in northeastern Ontario.

Like many people diagnosed with the disease, Rumball was healthy and active before she noticed the first symptoms.

In her case, she started to lose feeling in her legs and feet. The disease eventually progressed to the point where she was no longer able to move most of her muscles.

“People don't live with ALS,” said her niece Kanerva. “People get diagnosed and die.”

There is no known cause or cure for ALS.

On Saturday, June 21, Kanerva will participate in the Sudbury Walk for ALS to raise funds for research, and to support people with the disease through ALS Canada, which provides much-needed medical equipment.

A family caring for a loved one with ALS could spend about $150,000 over the course of that person’s lifetime.

The Sudbury walk will take place at the Delki Dozzi Memorial Park, located at 3 Mary St.

This year's goal is to raise $40,000 for ALS Canada.

Toronto Maple Leafs head coach Randy Carlyle, who has a family member with ALS, will be at the walk and give a speech to help rally participants.

Local politicians Glenn Thibeault and Joe Cimino will also speak at the event, along with Dr. David Taylor, ALS Canada's director of research.

Around 90 communities across Canada will host, or have already hosted, ALS walks. The goal is to raise $4 million nationally and $1.7 million in Ontario.