Folks who decide to run-walk a 24-hour marathon do so for obvious reasons like testing their mental and physical fortitude, and Washington University broadcaster Jay Murry has the same idea, but he’s also pushing his personal limits for a cause dear to his heart: Rett Syndrome awareness.
Murry, now in his 10th year as voice of Wash-U Bears football, will call Saturday’s home game vs. Wheaton College before beginning 24 hours of movement on Sumer Rec Center’s indoor track on campus in honor of Rett Syndrome Awareness Month.
“I have a soft spot for underdogs, so I began to see how I could use my hobby of running 12-hour ultra-marathons to aid a great cause,” Murry told 101 ESPN. “Last November, I had been thinking about doing a 24-hour run because I hadn’t done one before.”
Not a terribly well-known disease, Rett is highly debilitating and affects a new child born every two hours worldwide.
A non-inherited gene mutation causes the disease, which results in babies six to 18 months old not being to move on their own. As those afflicted grow older, many experience loss of speech, scoliosis, seizures or difficulty eating, all while keeping full mental capacity. An estimated 200,000 around the globe currently battle Rett Syndrome.
Murry became aware of Rett working as a paraprofessional at Fort Zumwalt West High School. It was there he met Ellie McCool, whose fight with Rett and subsequent high school graduation inspired him to get involved for the cause.
“I was taken by how Ellie handled her situation with as much grace as possible,” Murry said. “Her mind is fine. She was able to take all gen-ed classes and graduate in 2016, but Rett has saddled her with an inability to walk or move her arms, scoliosis, frequent seizures, and a limited ability to eat solid food because the disorder has affected how she is able to drink, chew, and swallow.”
Ellie’s difficulty eating necessitates a feeding tube, but her mental strength in overcoming these obstacles are what inspired Murry.
“Ellie has always been positive and has not succumbed to an ‘oh woe is me’ sentiment,” he said. “I would walk by her in a hallway at school and tell her that she looked wonderful today and she would give me the slightest of eye rolls and crooked grin in response.
“I figured if she can weather her storms with that kind of grace and grit, I have no right offering complaints about things in my life that pale in comparison to Ellie’s life.”
Which brings us to Saturday’s marathon, during which Murry and folks from RettSyndrome.org and St. Louis Children’s Hospital are hoping to meet a $20,000 goal. Donations for Rett research are especially pertinent now, as positive signs are pointing to potential breakthroughs.
RettSydrome.org and SLCH’s Rett Spectrum Clinic are at the forefront of aggressive research moving toward new treatments to alleviate issues like those Ellie faces. Tim Frank, RettSyndrome.org marketing director and father of a child with Rett, noted the importance of Murry’s marathon and events like it.
“What Jay is doing is incredible. He is pushing himself to the limit for all those who cannot,” Frank said. “Events like Jay’s help raise awareness of Rett syndrome and give a voice to those who don’t have one. We are grateful to Jay for his efforts and wish him the very best.
“We have never been closer to life-changing treatment and a cure, and have several drugs in the clinical trial process,” Frank added.
True to his Wash-U gig, Murry throws out a gridiron analogy to highlight where the fight against Rett currently lies.
“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,” Murry said. “But, they need an offensive line — donors like you and me — to help pave the way.”
If you’d like to donate to Rett research, you can visit RettSyndrome.org/RettGetsRocked or donate onsite at Wash-U’s Sumer Rec Center during Murry’s run, which kicks off at 6 p.m. Saturday.