Tag: advocacy

MA: Success Strategies for Individuals and Families Impacted by Fragile X

This educational conference features: Jennifer Epstein, PsyD, presenting on behavior management strategies and Craig Erickson, MD presenting existing and exploratory medication. Lisa Prock, MD from the Fragile X Program at Boston Children’s counseling families on liaising with school systems and Sharyn Lincoln MS CGC will lead session for newly diagnosed families. Carol Wilkinson MD PhD

NFXF Advocacy Day

NFXF Advocacy Day Group Photo

March 5-6, 2018 On National Fragile X Foundation Advocacy Day, held every March, members of the Fragile X community descend on Capitol Hill to relate their stories about Fragile X-associated Disorders, their families, and policies that support Fragile X families, such as health insurance, research at the NIH and DOD, research and public health programs

Advocacy Update: Local Meetings with Members of Congress

NFXF advocates are out in force during the August recess to meet with their Members of Congress and staff to raise awareness of Fragile X. They are discussing the public policy priorities of the National Fragile X Foundation, including healthcare, the ABLE Act amendments, the OPEN Act, and research and public health funding for Fragile

FY18 CDC Funding

The President’s budget cuts CDC funding for Fragile X research and awareness. Rep. Tom Cole (R-OK-4) and Sen. Roy Blunt (MO) oversee this funding and are working on the bill now! Contact their offices to express support for funding the CDC’s Center for Birth Defects and Development Disorders at least the same as Fiscal Year