ALS: Riding for a cure

Kris Noakes has a genetic form of the motor neuron condition known as amyotrophic lateral sclerosis. She’s leading a ride in Dundas that aims to raise money and awareness about the devastating disease. 

Kris Noakes found out two years ago, at the age of 48, that she has a genetic form of amyotrophic lateral sclerosis (ALS), just like her father, grandmother, aunts and uncles and a cousin.

ALS is a progressive neurological disease in which the brain loses the ability to communicate with the body’s muscles. Over time, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.

One in 300 people will develop ALS. Every 90 minutes someone is diagnosed and every 90 minutes some loses their fight.

“People are either terrified or perplexed when I share my diagnosis. It’s either their worst nightmare or they don’t know what it is.”

It’s not readily apparent that Noakes has such a devastating disease. But she increasingly struggles to open lids or button a shirt. She had to move into a bungalow in Dundas because her beloved home in Hamilton had too many stairs. 

Noakes, a former police officer, is quick to laugh and talks about her disease with a steely determination to do all she can to fend off its progression and to fight for others, including her children. The only time emotion floods forward is when she acknowledges she may not see her daughter, who is 13, grow as old as her son, who is 28.

She estimates it costs the average family about $150,000 a year, including home modifications, accessibility devices, uncovered medications and private home care.

“This is an absolutely horrible disease that plunges families into financial crisis,” says Noakes, who sits on the board of ALS Canada. “It will take anything you ever work for away from you.”

Though there isn’t nearly enough money going into ALS research, Noakes says discoveries are being made that make her hopeful a cure is coming.

Noakes, who is Indigenous, has thrown herself into advocating for those with ALS. She is vice-chair of Revolution Ride, a charity bike ride for ALS that will start and end at Shawn & Ed Brewing Co. in Dundas. The Sept. 24 fundraiser includes 12 km, 40 km and 90 km routes that wind through Westdale, Ancaster, and Hamilton.

“For me, it is a celebration that every year I am able to still ride my bike is a year I am winning the fight against this relentless, devastating disease.”