An open letter to the U.S. Congress

Support Rett Syndrome Research in FY22 Defense Funding Bill

12 so far! Let’s get to 25 signers!

I am reaching out on behalf of the International Rett Syndrome Foundation (Rettsyndrome.org).  Rett syndrome (RTT) is the most severe neurologic disorder to affect females in childhood, occurring in approximately 1 in 10,000 female births, and more rarely in males. RTT is characterized by a loss of acquired fine and gross motor skills and the development of neurological, cognitive and autonomic dysfunction. Most children with RTT experience cardiac, respiratory, digestive and muscular abnormalities, and are often unable to walk or talk. Further, many children with RTT develop scoliosis and seizures and require lifelong care, even as they live well into adulthood. It has been reversed in mice models, which is promising for those with Rett and their families. With no approved treatments, care providers can only rely on physical and occupational therapy, speech therapy, and seizure medications to manage the symptoms of disorder. We are chasing symptoms that can change or resist treatments at any time.  As a rare disease, there are still no approved treatments available for those with RTT, and there is no cure. I respectfully request you to urge Chairman Tester and Ranking Senator Shelby of the Senate Defense Appropriations Subcommittee to include Rett syndrome as a research topic eligible for funding through the Peer Reviewed Medical Research Program for Fiscal Year 2022 Defense Appropriations bill. This will allow researchers to access funds to develop new treatments or a cure for RTT. This bill is hope for our family and many like ours who have a loved one with Rett.

First sent on April 1 by RETTSYNDROME.ORG · 4 signers in the past 24 hours

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