NSMA member Murry run/walk 100 miles to raise awareness for Rett syndrome
10.19.2021What is Rett Gets Rocked?
- Jay Murry (WashU Sports Announcer and 3-time NSMA Missouri Sportscaster of the Year) and his solo ultramarathon fundraiser for Rett syndrome awareness
- Attempting to run/walk 100 miles in 32 hours (9 a.m. October 23 to 5 p.m. October 24)
- For: Rett Spectrum Clinic at St. Louis Children’s Hospital & International Rett Syndrome Foundation
- Last year: 86 miles October 3-4, 31.1 miles (50K) October 30-31 to reach fundraising goal
- Previous 3 Years of Rett Gets Rocked: raised over $14,000
- Donation Link: https://rettracers2021.funraise.org/fundraiser/jay-murry
What is Rett syndrome?
- A rare debilitating neurological disorder caused by a gene mutation in the brain
- Has the symptoms of autism, cerebral palsy, and epilepsy—in a child who cannot speak
- Strikes when a child is typically 6-18 months of age, just when he or she is starting to walk and talk
- Severe physical regressions afterward take away independent movement and means of communication
- Seizures, cardiac issues, swallowing and digestive problems, scoliosis are common with Rett syndrome
- Currently no cure, but progress continues in gene replacement therapy and drug treatments in clinical trials
Contact Information:
- Jay Murry (Event Director): jmsproductions3@gmail.com or (636) 219-7738
- Jackie Ventura, International Rett Syndrome Foundation (jventura@rettsyndrome.org)
- Katie Busch, International Rett Syndrome Foundation (kbusch@rettsyndrome.org)
- Hannah Brenton, St. Louis Children’s Hospital Foundation (Hannah.Brenton@bjc.org)