This Cardinals fan is helping end a serious disease and could use our help

By Sally Tippett Rains

This week’s “Cardinals Fan Spotlight” (which is a little unique as you will read) shines the light on a person who is using sports to try to make the world a better place. He saw a need for his help and he answered the call using his love for running. We love to promote people doing  good, with a heart for serving. He is literally “going that extra mile” to help eliminate a disease.

Jay Murry has seen and done a  lot in his life. He is a three-time Missouri Sportscaster of the Year of the National Sports Media Association; and has won several awards from the Missouri Broadcasters Association and the Missouri Associated Press.  He’s entering his 16th year of being the play-by-play “Voice of the Bears” at Washington University in St. Louis and has also run in a dozen ultramarathons in St. Louis.

But the thing he will never forget was meeting a young teen girl in a wheel chair the first day he started his job as a special education paraprofessional (teaching assistant) 12 years ago at Fort Zumwalt West.

“It was 2013 and I was intrigued with Ellie,” he said. “Even though she was in a wheelchair and could not talk, her eyes were bright and knowing. She was certainly aware of everything that was going on around her. I had never seen anything quite like that so I eventually got the nerve to ask about her condition.”

According to the International Rett Syndrome Foundation, “Rett syndrome is a rare genetic neurological disorder that occurs most often in girls, more rarely in boys, and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements. Rett syndrome is usually recognized in children between 6 to 18 months as they begin to miss developmental milestones or lose abilities they had gained.”

As he got to know the school and settled in to his job, he also got to know Katie Busch, who is a caregiver for Ellie, and at the time she was also a paraprofessional that accompanied Ellie to every class. He would ask questions to Katie so he could learn more.

“The more I found out about Rett, the more I discovered that it is a sinister and sometimes fatal disorder, and something that I wanted to help eliminate,” he said.  “As I met Ellie’s family and other families in the Bi-State region who have children with Rett syndrome, I decided to use my interest in sports and  running ultramarathons as fundraising opportunities for Rett syndrome research.”

Six of the marathons he has run have been for the fundraising initiative he started: “Rett Gets Rocked.”

He has used his love for running (and walking– as he sometimes uses the pun “Jay Walking”) to help raise money for Rett Syndrome research.

Ellie McCool is now 26 years old, and he has raised more than $23,000 since then. He remains close to Ellie and her family. He sees first-hand what the disease can do to families.

“Rett syndrome has become the target of my charity fundraising efforts, because it is a terrible disorder to have–not only for the kids who have it, but also for the families who have to sacrifice a lot to help their kids battle Rett 24/7.”

Through Ellie he has seen the cruelty of the disease

“It doesn’t manifest itself until a child is typically between six to 18 months of age,” he said. “So, just when a child is starting to walk and talk for the first time, Rett takes those abilities away–along with damaging the neurological connections between the brain and body. Children begin to regress physically, with many ending up in wheelchairs and not being able to speak or use sign language to communicate.

“But, many of them are able to think and process information–Ellie’s classes were all from the general curriculum and not adapted in any way. However, the neurological and physical rubble caused by Rett prevents those who have it from being able to express themselves.”

Murry has a bit of trouble expressing himself as a Cardinals fan because many would find it crazy that he is also a Cubs fan.

The Cards-Cubs  will always have a rivalry and in this election year where the country is divided and there is even more division–Murry is quick to point out that “Rett Syndrome is an equal opportunity destroyer of lives.”

“It does not discriminate along racial , socio-economical lines,” he said. “It doesn’t care about political views, religious beliefs, or who you root for on the baseball field. It doesn’t follow specific blood lines of a family. Rett can affect anyone.”

With this terrible knowledge it is something that gets to him every day. He knows he can go out and enjoy a baseball game or watch the WashU Bears play in any sport; yet he realizes there are families out there whose minds are on  things much more serious. That is why he never stops trying to raise money with the goal of helping end the disease. Rett gets rocked is his way to contribute. To contribute to his personal fundraising page for Rett Syndrome research CLICK HERE.

Who knows which donation will be the one that pushes the research over the top? That is what drives him.

“There is hope for a cure,” he said. “An FDA-approved drug helps patients get some relief from the effects of Rett; and two clinical trials in North America have shown significant promise. A cure is close to being reached, and that’s why I have been doing fundraising ultramarathons…to join other grassroots efforts around the country and raise the research funds necessary to produce a cure.”

Murry hopes that with the many people’s lives he has touched throughout the years some of those will take the time to help him in his quest. Perhaps fans have heard him as the the football play-by-play announcer at WashU during the 1990’s or as the News & Sports Director for 14 years at KWRE-AM/KFAV-FM Radio station in Warrenton, Missouri; or maybe the play-by-play announcer at WGNU-AM and KCLC-FM at Lindenwood University.

All of his experiences, including a Masters in Science from Lindenwood have led him to where he is: fighting in the race of time for a cure to Rett’s Syndrome.

RETT GETS ROCKED TO THE 1,000TH POWER
*1,044 Miles: Great Virtual Race Across The United States, May 1-Sept 30, 2024 from Delaware to WashU

*1,000 Laps (100 Miles): WashU’s Sumers Rec Center, Oct 5-6, 2024

** SAVE THE DATES **
Monday, September 30: Completion of 1,000+ miles in the Great Virtual Race Across the States.

Saturday, October 5: 9:00 a.m. start for 1,000 laps in Sumers Rec Center at WashU

Sunday, October 6: 11:00 p.m. ending to RGR1000 (or when 100 miles are reached)

If 62 miles equals 100 kilometers, does 62 years equal 100 kilo-years? That’s how old Murry will be, when he attempts his seventh annual “Rett Gets Rocked” solo ultramarathon!

Murry has enlisted the help of Fort Zumwalt West and he is asking for the help of the general public.

To find out how you can get involved, contact Jay Murry (Event Director)

Email: jmsproductions3@gmail.com