If you’re looking for a way to take action and make a difference for the Fragile X community, join our local advocacy program! NFXF Advocacy Day may be a once-a-year event, but Fragile X advocacy happens year-round and you don’t have to travel to Washington, DC to be a part of it! Our Washington Team will introduce you to the program, in which we train to volunteers visit their district and state offices to speak on behalf of the Fragile X community. Change can only happen when you get involved!


  • Dan Whiting is the NFXF Director of Communications and Government Affairs. He has nearly 20 years of experience in public policy and communications, serving on both the legislative and communications staff of a US Senator for 11 years, in the Bush Administration as Chief of Staff at the USDA Natural Resources Conservation Service, supporting advocacy at a national trade association, and, for nearly five years, as a senior strategist for communication initiatives across the DOD.
  • Holly Usrey Roos is the NFXF Volunteer Program Manager. She has worked for the Foundation since 2010. She is also the founder and co-leader of the CSN local chapter, the Central Illinois Fragile X CSN. Holly has presented at conferences on topics such as “Working with Your School,” “Media Relations,” “Fundraising,” and “How to Talk to Your Child’s Classmates About Fragile X.”
  • Denise Devine has served on the Public Policy Committee since 2012. In that committee, she leads the NFXFAD Mentor Program and has been a part of the local advocacy program (STAR) since its inception in 2015. In addition to her work in Public Policy, she is the CSN chapter leader of Western MA Fragile X, winning multiple awards in that capacity.