HUTCHINSON, Kan. — HutchCC raised $2000 for former voice of the Blue Dragons Rusty Hilst to help in his struggle with bulbar onset ALS and his GoFundMe page as of Monday night has $78,890 raised of the original $125,000 goal.
The money from the Blue Dragons was raised from a portion of the gate proceeds at last Saturday's games with Northwest Tech.
For more information and updates on Rusty's condition, visit the Rally for Rusty Hilst Facebook page
Anyone who is able to help can give at https://www.gofundme.com/f/rally-for-rusty-hilst-vs-als
The initial goal from friends and family is to raise $125,000 that will cover his medical prescription co-pay, the cost of renovations to his home to make it wheelchair accessible and other anticipated expenses.
Dr. Chris Rodgers, a close friend of Rusty’s in Hutchinson, wrote the following summary of ALS on the GoFundMe page.
"Amyotrophic lateral sclerosis is also known as Lou Gehrig’s Disease," Rodgers said. "The cause is unknown. It attacks the nerves that control voluntary muscles—the ones we control for activities of daily life. As the disease progresses and the nerves die, victims lose strength and eventually the ability to move arms, legs, body or even control breathing. In most cases, the mental function remains normal with sharp clear minds in many cases.”
Dr. Rodgers says the average life expectancy after an ALS diagnosis is 2 to 4 years, but it is variable and hard to predict. Until recently there have been almost no effective treatments, but in the fall of 2022, the FDA approved the use of a new drug, RELYVRIO, which can delay the progression of the disease.
RELYVRIO is available but extremely expensive with co-pays near $50,000 annually even for insured patients. The GoFundMe campaign will help with the cost of this drug and cover other medical and home conversion expenses.
For more information and testimonials from those who care for Rusty, go to his GoFundMe page.
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