A Mizzou graduate who’s now Washington University’s play-by-play man is walking for 24 hours tonight through tomorrow night to raise awareness of Rett syndrome and to raise research dollars needed to defeat it.
Jay Murry, who graduated from the University of Missouri-Columbia in 1986 with a degree in speech and dramatic art and psychology, began his run and walk at 8 pm this evening on the Sumers’ indoor track at Washington University. His goal is to cover 70 miles and raise more than $5,000 for two entities: the Rett Syndrome clinic in St. Louis Children’s Hospital and the International Rett Syndrome Foundation.
“It’s basically a mutation of the X chromosome in the brain, a gene mutation. And that stems development messages from the brain to the rest of the body. So once the child gets that, there are some regressions neurologically, physically. And to point where many have to be in wheelchairs for the rest of their lives and they cannot speak or even do sign language to communicate,” Mr. Murry says.
He says individuals with Rett suffer from seizures, extreme nerve pain, GI issues and eating/drinking problems that can be life-threatening. The issue is personal for Murry.
“I do because no only is it bad for the kids that get it but the parents suffer too because one of the parents usually has to give up a career to stay with the child 24-7 and so that has a devastating effect on the family as well as the individual,” says Murry.
Mr. Murry has raised more than $25,000 in five previous events. He emphasizes that there is hope. Murry says the FDA approved a drug marketed as Daybue in March, saying it blunts some of the effects of Rett. He also says some improvements in hand movement and vocal ability have been noted by parents with the use of Daybue.
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