Every March, we go to Washington, DC, for National Fragile X Foundation Advocacy Day, to advocate for Fragile X funding and important issues that will impact the future of our community. It is an incredible event that not only enlightens our Members of Congress (MOC) on Capitol Hill, but inspires our advocates to make a difference in their lives and the lives of families around the nation. The advocates who joined us in Washington were all volunteers, who spent their own valuable time and money to speak on behalf of the Fragile X community.
This year was our biggest turnout ever: More than 180 advocates representing 30 states visited their Members of Congress and staff at their offices in 150 meetings! Before meetings even began, as we gathered at the steps of the Capitol to take our traditional group photo, the excitement was palpable among veteran and rookie advocates alike.
A meeting with a MOC can last anywhere from five minutes to half an hour, which is why the NFXF trains advocates to effectively communicate essential information. That essential information: Their personal Fragile X story. The stories of challenges and triumphs that drove advocates to join us at NFXF Advocacy Day this year are the ones that truly speak to our leaders in Congress. After each meeting, we leave behind information about Fragile X in folders that include our 2015 asks.
Those asks were:
- Appropriations Language in Favor of Fragile X Research and Programming: We requested continued funding of Fragile X research and programming from the NIH, CDC and DOD. Each budget year, MOC, the President and the Agencies work together to set funding levels and priorities. Our goal as advocates is to get our MOC to sign a letter to the Appropriations Committee asking them to support Fragile X as a priority. This is how we get millions of dollars of funding for Fragile X research and programs each year.
- Co-Sponsorship of the T.I.M.E. Act: T.I.M.E stands for the Transitioning to Integrated and Meaningful Employment Act. The bill will gradually, carefully and responsibly phase out the use of Special Wage Certificates under Section 14(c) of the Fair Labor Standards Act (FLSA) which in-turn would facilitate the transitioning of people with disabilities now working in sheltered, segregated employment, sometimes for pennies per hour, to integrated employment positions paying competitive wages.
- Co-Sponsorship of the K.A.S.S. Act: K.A.S.S. stands for the Keeping All Students Safe Act. The bill addresses the use of seclusion and restraint of students in public schools. We’ve advocated for similar bills in past sessions of Congress. This time, we hope that our Members of Congress pass the bill.
We are incredibly proud of the advocates that volunteered to come to Washington with us to make the world a better place for families living with Fragile X. We also want to thank them for braving the following day’s snowstorm, which delayed many flights out of DC and made other forms of travel just as difficult.
Thank you, advocates, for your dedication and hard work. You make National Fragile X Foundation Advocacy Day a success every year.