Make Your Voice Heard
Advocate for someone you love with Rett syndrome.
Take action now to raise awareness of Rett syndrome in your state, advocate for accessible and affordable care, and help secure federal funding for critical research towards treatments and a cure. The most powerful advocacy tool is your story!
ADVOCACY NEWS
The International Rett Syndrome Foundation would like to thank the following Members of the U.S. House of Representatives for supporting a request to provide research funding for Rett syndrome through the Department of Defense in Fiscal Year 2024:
Sean Casten (D-IL-6), Sheila Cherfilus-McCormick (D-FL-20), Danny K. Davis (D-IL-7), Lloyd Doggett (D-TX-37), Jim Himes (D-CT-4), Eleanor Holmes Norton (D-At-Large-DC), David Scott (D-GA-13), Abigail Spanberger (D-VA-7), Brad Wenstrup (R-OH-2), and Susan Wild (D-PA-7).
We are thrilled to share the recent announcement that our efforts in 2022 resulted in $663,000 in federal funding for Rett syndrome research! Thank you for your advocacy!
As we begin our efforts to secure our position for 2024, we can see this success as proof that, though small, we are mighty and we can change the world for our loved ones with Rett.
Thank you to our Congressional champions: Representatives Abigail Spanberger, VA and Brad Wenstrup, OH, who sponsored our efforts, as well as Representatives Al Green, TX, Danny K. Davis, IL, Jim Himes, CT, Jimmy Penetta, CA, Lloyd Doggett, TX, Lucy McBeth, GA, Nydia M. Velázquez, NY, Shelia Jackson Lee, TX, Eleanor Holmes Norton, DC, Susan Wild, PA, and Sean Casten, IL. Your support made a difference in the lives of our loved ones with Rett syndrome.
October is Rett syndrome Awareness Month and governors in several states honor our effort by signing proclamations declaring October to be Rett syndrome Awareness Month in their states. Click below to see which states participated in 2022 and find resources to procure a proclamation in your state in 2023.
We’re excited to share that on March 11th President Biden signed the Fiscal Year 2022 (FY22) Omnibus Appropriations bill into law. The measure lists Rett syndrome as one of the topics eligible for funding through the U.S. Department of Defense’s (DoD) Peer-Reviewed Medical Research Program (PRMRP). Congress provided a total of $370 million for roughly 50 topics in this account, and the result is that researchers studying Rett syndrome will be able to apply for millions of dollars in federal grants through this account.
Community Advocacy Made It Happen!
We would like to thank our incredible Rett syndrome community for its advocacy efforts, as so many of you contacted your U.S. Representative and U.S. Senators to urge their support for this effort.
We’d like to especially thank Reps. Abigail D. Spanberger (D-VA-7) and Brad Wenstrup (R-OH-2) for their leadership in sponsoring the House Support Letter for listing Rett syndrome as a topic eligible for PRMRP funding in the FY22 Defense Appropriations bill. In addition, we’d like to thank the following Representatives for signed the support letter to the Defense Appropriations Subcommittee:
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)]
Given the great need for additional research on Rett syndrome, IRSF is excited to have Rett syndrome listed as topic eligible for Dept. of Defense funding. Next, we will be working with the Rett syndrome research community to help guide them through the process of applying for these research funds.
RESOURCES
Contact Katie Busch at [email protected] with further questions.