It seems that I have been the only member of the only (unofficial) fall sport at WashU, with my 100-mile ultramarathon attempt earlier this month to promote the fight for a cure during Rett Syndrome Awareness Month. That attempt fell a bit short in miles and fundraising, so I'm going into overtime to try and reach $5,000 in donations.
Rett Gets Rocked 50K for $5K will commence Friday, October 30 at 8 pm Central, and end at 8 am Halloween morning. Counting donations received (thanks to retired WashU men's basketball coach Mark Edwards and his wife Mary, and to Mike McGrath and his University of Chicago men's basketball program for their donations!) and those yet to be sent and processed, I am at $4,440.53. Very, very close to my goal...which will fund a researcher's work for a month. Wouldn't it be cool if he or she cracked the code for a cure of Rett syndrome, on our dime?!
I reached 86 miles in my "Rett Gets Rocked Virtual Ultra Weekend" October 3-4. I'm very proud of that result, but there's more work to be done. Proceeds from the event will be split between Rettsyndrome.org (the only national organization spearheading research and providing resources for affected patients and their families) and the Rett Spectrum Clinic--a collaboration between the WashU School of Medicine and St. Louis Children's Hospital.
Rett syndrome is a rare, non-inherited neurological disorder that is caused by a gene mutation in the brain. It primarily affects girls (1 in every 10,000 girls develop Rett). It strikes typically when a child is 6-18 months old, and it has the characteristics of ALS, autism, epilepsy, and Parkinson's...all rolled into one sinister disorder. It takes away the child's ability to move and communicate.
In essence, Rett does to a child what Lucy in the "Peanuts" comic strip does to Charlie Brown when he tries to kick the football that she is holding. The only difference is that Charlie Brown can get back up to try again. Those who are afflicted with Rett syndrome don't get another chance to enjoy a vibrant life.
Researchers are working to re-engineer the gene mutation that turns on Rett, so it can be forever turned off. Four drug therapies are in the FDA review pipeline, with one (trofanitide) one level away from review. And, iPad tablets with retinal scan technology are giving those with Rett a voice they haven't had since they were toddlers.
The full court press on Rett is paying off. You can help keep the pressure on Rett, by going to my Rett Racers donation page:
https://rettracer.everydayhero.com/us/rett-gets-rocked-2020Thanks for your time and consideration, and hopefully there will be basketball to play and broadcast at the start of 2021!
Jay Murry
Play-By-Play Announcer, Washington University in St. Louis
Event Director, Rett Gets Rocked 50K for $5K
