CINCINNATI – March 22, 2022 – The Omnibus Fiscal Year 2022 (FY22) appropriations bill passed by Congress in early March includes federal funding to support research on Rett syndrome. The report accompanying the legislation listed Rett syndrome as a topic eligible for research funding through the U.S. Department of Defense (DoD) Peer-Reviewed Medical Research Program (PRMRP), and this will allow researchers to apply for federal grants to further study Rett syndrome.
This significant achievement marks a year-long advocacy effort that started with the Rett syndrome community writing to Members of Congress to seek federal funding support for Rett. In April 2021, the International Rett Syndrome Foundation (IRSF) began educating policymakers about Rett syndrome, its impact on families, and the need for federal funds to advance research. Accessing federal support is an important step in finding treatments and a cure for Rett syndrome, as these additional funds oftentimes exceed the funding levels that have been previously provided only through private foundations.
IRSF is grateful for the support of Representatives Abigail D. Spanberger (D-VA-7) and Brad Wenstrup (R-OH-2) for sponsoring the Rett syndrome support letter to the House Defense Appropriations Subcommittee. The House support letter was written in honor of Brooke Mehta, a child who passed away last year from complications due to Rett Syndrome. Her mother, Leslie Mehta, an IRSF Board Member, continues to fight for treatments and a cure for all those with Rett syndrome.
“One year ago this month my forever five-year-old daughter Brooke passed away from Rett syndrome complications. I watched helplessly as her seizures increased in frequency and severity. The passage of this bill will make way for much needed medical research that hopefully will lead to effective treatments and, one day, a cure so that other families do not have to endure the pain and loss that my family is experiencing now of a happy and vibrant little girl gone all too soon. This bill is Brooke’s legacy,” said Mehta.
“For several years, I have had the privilege of getting to know my constituents Brooke and Leslie Mehta. Their story is powerful, and it’s my honor to support such a beautiful and loving family,” said Rep. Spanberger.
“As we remember Brooke’s life, I’m committed to supporting all children that live with this rare disease — and that includes additional investments in research. In recent weeks, I am proud to have helped lead the charge to push this research funding across the finish line — and I continue to be inspired by Leslie’s commitment to her daughter, their family, and other Americans who are working around the clock to find a cure for Rett Syndrome,” she said.
In addition, IRSF greatly appreciates the support of the following Representatives who signed onto the Rett syndrome support letter:
Rep. Sheila Jackson Lee (D-TX-18)
Rep. Lloyd Doggett (D-TX-35)
Rep. Lucy McBath (D-GA-06)
Rep. Danny K. Davis (D-IL-07)
Rep. Jimmy Panetta (D-CA-20)
Rep. Marie Newman (D-IL-03)
Rep. Al Green (D-TX-09)
Rep. Nydia M. Velázquez (D-NY-07)
Rep. Carolyn Bourdeaux (D-GA-07)
Rep. Jim Himes (D-CT-04)
Rep. Mondaire Jones (D-NY-17)
As the research community awaits details of the federal awards, IRSF will be working closely with the Rett syndrome research community to guide its members through the process of applying for funding through the DoD program.
About Rett syndrome
Rett syndrome is one of 7,000 rare diseases recognized by the National Institutes of Health. Rett syndrome is caused by a genetic mutation that affects 1 in 10,000 females and even fewer males. Individuals with Rett syndrome are often unable to walk or talk; experience cardiac, respiratory, digestive, and muscular abnormalities; and may develop scoliosis and seizures. There is no current treatment or cure for the disease.
About International Rett Syndrome Foundation
As the leading Rett syndrome research and advocacy organization, the International Rett Syndrome Foundation (IRSF) builds upon our nearly 40-year commitment to breakthrough discoveries and life-changing advancements in research toward a cure while supporting families affected by Rett syndrome. The Foundation is committed to supporting efforts that fund ground-breaking research for therapeutics, treatments and a cure for Rett syndrome and removing barriers to ensure the success of clinical trials. Every day we are in the fight to end Rett syndrome.
We have invested over $54M in research leading to identifying Rett syndrome’s cause, proving Rett syndrome is reversible in mice and developing multiple clinical trials for Rett syndrome. We fight for families living with Rett syndrome and a world without it.