WashU Play-By-Play Broadcaster Jay Murry will attempt to complete an unusual doubleheader October 13-14. First, at historic Francis Field, he will call the WashU home football game vs. nationally-ranked Wheaton College at 1:00 p.m. October 13. Then, he will embark on a solo 24-hour run/walk at 6:00 that night to raise awareness and research funds for the fight against Rett syndrome.
That event will be conducted at the Sumers Recreation Center indoor track until 6:00 p.m. October 14; and proceeds will be split evenly between Rettsyndrome.org and the Rett Spectrum Clinic at St. Louis Children’s Hospital. The fundraising goal for the event is $20,000.
Jay is entering his 10th year as the “Voice of the Bears”, and he is using his first attempt at a 24-hour solo ultramarathon to bring attention to Rett syndrome—a disorder that takes away the physical abilities primarily of young girls, just as they begin to learn how to crawl and walk. He first considered the concept of the unique 24-hour Rett Syndrome Gets Rocked challenge last November, as a way to combine the personal goal of doing a 24-hour ultramarathon with a desire to bring more attention to a little-known but very devastating medical condition. As a result, Rett Syndrome Gets Rocked will be conducted during the heart of Rett Syndrome Awareness Month in October.
A non-inherited gene mutation creates the onset of Rett typically between 6-18 months old, and those who get it quickly become unable to move purposefully. Many of them also cannot speak or gesture; and other health problems like seizures, eating difficulties, and scoliosis often occurs. Those with Rett syndrome have actively functioning minds, but their compromised physical structures make it nearly impossible for them to communicate—making Rett a source of heartbreak for patients and their families. A child who becomes afflicted with Rett syndrome is born every two hours worldwide; so while Jay circles the Sumers indoor track for 24 hours in October, 12 children who are born will develop Rett. And, there are an estimated 200,000 people around the world who have the non-inherited disorder. Despite those statistics, many people aren’t aware of Rett’s existence.
Jay admits that he didn’t know anything about Rett syndrome until he met Ellie McCool, a student at Fort Zumwalt West High School five years ago. Ellie has faced the challenges of Rett syndrome with grace and grit, and she was able to graduate two years ago as a result of her determination. Jay was inspired by Ellie’s odyssey and set out to create an opportunity to try and help her and others regain what Rett took
Hope on the horizon—aggressive research is being coordinated by Rettsyndrome.org and conducted at prestigious facilities around the country like the Rett Spectrum Clinic at St. Louis Children’s Hospital. As a result, there are four compounds being tested that could possibly be used in medical treatments to alleviate some of the daily health problems caused by Rett syndrome. And, the gene mutation that causes Rett syndrome has been isolated and identified, allowing researchers to pinpoint their efforts toward the re-engineering of the gene and a subsequent cure of Rett.
Since football season is here, Jay uses a football analogy to describe the progress of the battle against Rett syndrome: “We’re inside the Rett syndrome red zone, and there are great researchers at the skilled positions ready to take the ball across the goal line for a cure. But, they need an offensive line—donors like you and me—to help pave the way.”
The donation page at the Rettsyndrome.org website: https://www.rettsyndrome.org/RettGetsRocked
Facebook page: Rett Syndrome Gets Rocked (@24hourjaymurry on Facebook)