Washington University in St. Louis play-by-play announcer Jay Murry completed solo ultramarathons in the past two years to raise awareness of Rett syndrome. This October, “The Voice of the Bears” plans to go further in the fight for a cure during Rett Syndrome Awareness Month.
Murry will attempt a 100-mile solo ultramarathon, spanning 32 hours—from 9 a.m. October 3 to 5 p.m. October 4—in The Vineyards subdivision (756 Napa Lane, St. Charles MO, 63304). Murry hopes to raise over $5,000 through his Rett Gets Rocked initiative. Proceeds will be split between Rettsyndrome.org and the Rett Spectrum Clinic in St. Louis Children’s Hospital.
In the last two years, through the Rett Racers program, Murry’s solitary strolls of 61.5 and 60.3 miles in 24-hour periods at WashU raised a combined $8,500. In 2020, “Rett Gets Rocked Virtual Ultra Weekend” challenges runners to run an ultra when other events have been cancelled due to COVID-19.
Rett syndrome is a rare non-inherited neurological disorder caused by a gene mutation in the brain. It is like cerebral palsy, autism, ALS, epilepsy, and Parkinson’s, all rolled into one sinister disorder. It affects primarily girls (1 in every 10,000 births), but Rett does affect boys as well. Seizures are common, which can create difficulties in eating and drinking and life-threatening complications.
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Rett syndrome acts like Lucy in the “Peanuts” comic strip. Just when Charlie Brown has great hopes of kicking a field goal and enjoying his achievement, Lucy cruelly pulls the football away from him. Charlie Brown ends up flat on his back. Likewise, Rett pulls a vibrant q uality of life away from boys and girls, starting around 6-18 months of age—causing severe neurological, physical, and communication impairments. Some pass away because of complications from Rett syndrome—as was the case of a three-year-old boy from Imperial, Missouri in mid-August.
There is hope for a cure of Rett syndrome. Researchers are working to re-engineer the gene mutation that causes Rett. Several drugs are in various levels of clinical trials that are geared toward diminishing seizures and other effects of Rett. And, eye-gaze retinal scan technology in iPads gives patients a voice that Rett syndrome took away.
To keep that progress going, Murry will gladly attempt to run and walk for 100 miles to rock Rett syndrome.