Family brings awareness to bill that would help treat ALS disease

West Virginia

CHARLESTON, WV (WOWK) — Saturday’s dreary weather didn’t stop one Charleston-area family from bringing awareness to Amyotrophic Lateral Sclerosis Disease on the 20th anniversary of the Walk to Defeat ALS.

It’s also commonly known as Lou Gehrig’s disease.

ALS is a progressive nervous system disease, and even though there’s no cure for it, the family of Cherie Chambers Cowder says there is something that might help, and that’s what they were trying to bring awareness to Saturday.

In just a year, ALS incapacitated former child psychologist Cherie Chambers Cowder.

Her brother Scott Chambers says it came on fast and her symptoms began in her throat.

“She was able to sing, she was a very accomplished singer and she was in a lot of local plays so she noticed she was not able to sing”, he said.

Cowder now uses a text machine to communicate, because ALS also took her voice away.

“ALS is an awful disease for the patient, but as a psychologist I found it to be an awful disease for my family and friends who watch helplessly as I deteriorate a little more each day,” Said Cowder through her audible texting device.

ALS is an awful disease for the patient, but as a psychologist I found it to be an awful disease for my family and friends who watch helplessly as I deteriorate a little more each day.

Cherie Chambers Cowder

Still, her family says her spirit is like that of a unicorn, the theme of her walk Saturday.

“The unicorn is her symbol, she’s a unique person and a lot of fun,” said Chambers.

But behind the bright unicorns, Cowder and her family were trying to bring awareness to a bill in congress that would help those with ALS.

H.R. 1071, or the Accelerating Access to Critical Therapies for ALS Act was introduced in Congress in June of 2020.

The bill would establish a grant program and a new center within the FDA to facilitate access to investigational therapies for neurodegenerative diseases.

“People are dying anyway so they may as well try it and see if they have a chance at living,” said her niece Ali Chambers.

She says there’s currently an experimental drug called NurOwn for ALS, but until there’s a definitive cure, they’ll keep trying to “stab-out” ALS.

To help Cherie Cowder and others like her you can donate to the local chapter of the West Virginia ALS Association.

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