Content courtesy Rally for Rusty Hilst GoFundMe
HUTCHINSON, Kan. — A long time fixture in Hutchinson USD 308 and on the air on Eagle Radio, former Sports Director Rusty Hilst, has been diagnosed with ALS.
This happened just around the time of Rusty’s 80th birthday. Family was notified at the holidays.
Time is of the essence since Rusty and his family have been told that he has bulbar onset ALS. In bulbar ALS the muscles involved in breathing, speaking, and swallowing are affected first.
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 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 and requested that Hutch Post promote this story.
"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.”
Anyone who knows Russell “Rusty” Hilst, knows that his entire life has consisted of giving back, a life of service to his church, to his teaching profession and to youth. Born in Meade, Kansas, Rusty is a Hutchinson High School graduate and a lifelong resident of that central Kansas community.
He’s been a revered math teacher at Hutchinson High School and The Voice of the Hutchinson Salthawks and Hutchinson Blue Dragons for more than half a century. Hilst has been involved in coaching and promoting junior golf in Kansas for more than four decades.
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.
CLICK HERE to download the Hutch Post mobile app.
CLICK HERE to sign up for the daily Hutch Post email news update.