Lexington man travels to nation’s capital for ALS rally

May 20, 2020

Erica Bivens,

LEXINGTON, Ky. (WTVQ) – A Lexington man is traveling the country, hoping to spread awareness to others about his journey living with ALS. This week, that journey took him to the nation’s capital.

On Wednesday, Jeramey Etherton traveled to Washington D.C. where he joined dozens of protesters from across the country for an ALS body bag protest. Etherton says the goal is to get the FDA to fast-track a treatment for ALS as quickly as they are for COVID-19.

“We need therapy access,” said Etherton.

Etherton understands COVID-19 is a virus that spreads easily. While ALS does not, he points out, “Our disease is 100% fatal.”

May is ALS awareness month. Right now, there is still no cure for ALS.

The group protesting brought signs and body bags, hoping they would get the attention of national leaders.

“The representation of the body bag is that once you’re diagnosed with ALS, it’s a death sentence,” said Etherton. “A disease like ours has been around for 150 years and kills every patient.”

When asked if he thought they accomplished their goal, Etherton said, “If the government didn’t hear us, if Congress and the Senate didn’t hear us, we still spread our message.”

Etherton started Jerameys Journey as a way to educate others through his own experiences and hopefully find a cure. You can follow his journey HERE.