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
IT’S OFFICIAL! Rett syndrome has been listed as a topic eligible to receive federal research funding through the U.S. Department of Defense (DoD) FY24 funding bill’s Congressionally Directed Medical Research Programs (CDMRP)! THANK YOU! Because of your advocacy efforts to raise awareness of Rett with your elected officials, researchers will once again have access to millions in federal grants.
The appropriations bill was passed by the House and Senate and signed by President Biden in late March 2024. Soon researchers will be able to apply to receive DoD funding to advance more treatments and cures for families affected by Rett syndrome. (Application will be available at this link as soon as it becomes available)
Thank you so much to our incredible Rett syndrome community and to everyone who continues to raise awareness and advocate for more funding, more treatments, and solutions for ALL. Thank you to our friends at The Conafay Group for providing their services pro-bono to help IRSF navigate this process on the Hill. And thank you to the members of Congress who signed the FY24 letter of support.
IRSF works tirelessly to advocate for you and your loved one with Rett syndrome. Our work takes many forms, our persistence is often unseen, and our successes are the result of countless hours spent meeting with, raising awareness, and educating key decision-makers on the needs of our Rett community.
During the last week of February 2024, our advocacy efforts were at the forefront as we spent the week raising awareness of Rett syndrome in Washington, D.C. for Rare Disease Week. Click below for our feature from IRSF’s Government Relations Manager, Katie Busch, sharing more about what it takes to advocate and how critical these efforts are to bringing home treatments and cures.
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).
As of July 2023, Rett syndrome is listed in the FY24 Senate Defense funding report, but it is critical that it be listed in the final FY24 bill being negotiated between the House and Senate.
BIG NEWS! The U.S. Department of Defense awarded $13 million to Vanderbilt University Medical Center to lead a multisite clinical trial for Rett syndrome! This umbrella trial across 4 clinical sites, all IRSF-designated Centers of Excellence, will evaluate drugs that have already been approved by the FDA for the treatment of Rett. If benefit is shown, this trial will speed up the regulatory process and allow for the accelerated evaluation of future potential therapies, ultimately getting treatments to Rett patients sooner.
Rett syndrome was eligible to receive this funding because of your continued support of IRSF’s federal advocacy efforts! Thank you to everyone who continues to raise awareness and advocate for more funding, more treatments, and solutions for ALL.
We are thrilled to share that our advocacy efforts in 2022 resulted in $663,000 in federal funding for Rett syndrome research! This funding supports two research projects to bring treatments to Rett patients from researchers also funded by IRSF:
- Dr. Ronald Emeson’s project takes an RNA-based approach to repairing MECP2 transcripts and also potentially reversing symptoms of Rett syndrome.
- Dr. Jeff Neul’s project aims to establish EEG-based biomarkers for treatment response in RTT, potentially streamlining clinical trials and accelerating the development of novel therapies.
Thank you for your advocacy! This success is 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.
We’re excited to share that on March 11th, 2022, 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.
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 recently participated and find resources to procure a proclamation in your state.
RESOURCES
Contact Katie Busch, Government Relations Manager, at [email protected] with further questions.