We are pleased to announce the addition of Dan Whiting to the NFXF team as Director of Communications and Government Relations. With over 19 years of experience in public policy, communications and marketing, including 11 years on the legislative and communications staff for a US Senator, Dan possesses a unique perspective and understanding of how we can best position the NFXF for growth in order to better deliver on our mission of driving research, creating awareness and providing unwavering support to everyone living with Fragile X.

We are excited about the depth and breadth of experience that Dan will add to our already outstanding team. Those of you attending NFXF Advocacy Day in a couple of weeks will have the opportunity to meet Dan in person.

It was not our intent to find someone to take on both the Communications and Government Affairs roles, but once we understood Dan’s qualifications and the fact that he lives in the Washington, DC suburbs, we knew he was uniquely qualified to take our communications and advocacy efforts to the next level, helping us generate funding for world-class research, and cultivating a strong Fragile X community. The added benefit of consolidating the two positions is consistent with our commitment to being effective stewards of our donor’s dollars, and continued efforts to be as organizationally efficient as possible.

Jeffrey Cohen has been supporting the Foundation’s legislative affairs efforts as a paid consultant, and that consulting work will end. What will not change, in any way, is how grateful we are to Jeff for his contributions to our organization and cause. There is simply no way to replace his service and dedication. As a parent and leader of the board of directors, Jeff created and chaired the Public Affairs committee, and established the NFXF Advocacy Day back in 2000. As a result of these initiatives and Jeffrey’s year-round, tireless efforts, we have realized more than $325 million in federal funding for Fragile X research and programming, and helped pass the ABLE Act. We simply would not be where we are today without Jeff’s commitment and his 17 years of leadership of the Foundation’s advocacy efforts. These accomplishments, as significant as they are, pale in comparison to his personal contributions to the Fragile X community through the relationships he has fostered with so many of us and our families.

The Foundation is committed to building on this strength, changing the game for research trials and providing a new level of community support. We hope that Jeff will, along with each and every one of you, continue to be an engaged member of the Fragile X family.

We understand that this may not answer all of your questions. Please feel free to contact Brian Silver, NFXF Board President at bsilver@fragilex.org, or me if you have further questions.


Together, We’re Stronger!


Tony Ferlenda, CEO