Hello WIAC fans! Hope you are doing well and ready for another fun football weekend!
While I prep for the upcoming North Central/WashU clash, I am also preparing to do a 33-hour run/walk next Saturday, October 29-30 for Rett syndrome awareness and research funding.
Rett Gets Rocked 2022 will feature my solo attempt to reach 100 miles, and a 24-hour Rett Relay involving WashU students and other campus folks. I will be on the indoor track in the Sumers Recreation Center, and the relay will be mainly outdoors at Francis Olympic Field. Our aim is to raise $10,000 or more, to be split between the International Rett Syndrome Foundation (IRSF) and the Rett Spectrum Clinic in the WashU School of Medicine at St. Louis Children's Hospital.
This is my fifth year for a Rett Gets Rocked ultramarathon...over the previous four years, more than $20,000 have been raised.
Rett syndrome is a neurological disorder caused by a gene mutation in the brain. It doesn't manifest itself until a child is just learning how to walk and talk, around 6-18 months old. When it does, those basic abilities get taken away. Many children end up in wheelchairs for the rest of their lives, and can't talk or even do sign language to communicate. And, since it's a spectrum disorder, there are other things that are typical with Rett syndrome...frequent seizures, severe scoliosis, eating and drinking difficulties that require the insertion of a g-tube for nourishment, among other difficulties. And, Rett doesn't care about one's family medical history, socioeconomic status or ethnic background. It is an equal opportunity destroyer of lives and families.
There's no cure yet, but preclinical studies within the last year at UT-Southwestern in gene replacement therapy have resulted in reversing Rett in mice. And, the FDA is giving a drug called Trofinetide a Priority Review, after clinical trials were very successful in reducing the severity and frequency of seizures, and restoring some of the function of the arms and legs. On March 12, the FDA will make a final determination about Trofinetide and whether it becomes the first prescription drug specifically to treat Rett syndrome.
So, there is hope. That propels me forward in my lunatic fringe interest in ultramarathon running. You can join the fight for a cure without logging a mile. The donation link to my IRSF Rett Racers donation page is https://rettracers.funraise.org/fundraiser/jay-murry.
Feel free to forward it to interested parties!
Many thanks for your time and consideration!
Best regards,
Jay Murry
WashU Play-By-Play Announcer
Event Director, Rett Gets Rocked 2022
While I prep for the upcoming North Central/WashU clash, I am also preparing to do a 33-hour run/walk next Saturday, October 29-30 for Rett syndrome awareness and research funding.
Rett Gets Rocked 2022 will feature my solo attempt to reach 100 miles, and a 24-hour Rett Relay involving WashU students and other campus folks. I will be on the indoor track in the Sumers Recreation Center, and the relay will be mainly outdoors at Francis Olympic Field. Our aim is to raise $10,000 or more, to be split between the International Rett Syndrome Foundation (IRSF) and the Rett Spectrum Clinic in the WashU School of Medicine at St. Louis Children's Hospital.
This is my fifth year for a Rett Gets Rocked ultramarathon...over the previous four years, more than $20,000 have been raised.
Rett syndrome is a neurological disorder caused by a gene mutation in the brain. It doesn't manifest itself until a child is just learning how to walk and talk, around 6-18 months old. When it does, those basic abilities get taken away. Many children end up in wheelchairs for the rest of their lives, and can't talk or even do sign language to communicate. And, since it's a spectrum disorder, there are other things that are typical with Rett syndrome...frequent seizures, severe scoliosis, eating and drinking difficulties that require the insertion of a g-tube for nourishment, among other difficulties. And, Rett doesn't care about one's family medical history, socioeconomic status or ethnic background. It is an equal opportunity destroyer of lives and families.
There's no cure yet, but preclinical studies within the last year at UT-Southwestern in gene replacement therapy have resulted in reversing Rett in mice. And, the FDA is giving a drug called Trofinetide a Priority Review, after clinical trials were very successful in reducing the severity and frequency of seizures, and restoring some of the function of the arms and legs. On March 12, the FDA will make a final determination about Trofinetide and whether it becomes the first prescription drug specifically to treat Rett syndrome.
So, there is hope. That propels me forward in my lunatic fringe interest in ultramarathon running. You can join the fight for a cure without logging a mile. The donation link to my IRSF Rett Racers donation page is https://rettracers.funraise.org/fundraiser/jay-murry.
Feel free to forward it to interested parties!
Many thanks for your time and consideration!
Best regards,
Jay Murry
WashU Play-By-Play Announcer
Event Director, Rett Gets Rocked 2022