It is my honor and privilege to join the Fragile X community as the new CEO of the National Fragile X Foundation.

Since my arrival, I have had the opportunity to witness, first-hand, what I already suspected – that this is a very special and dedicated community, filled with individuals who are passionate about making a positive difference for those living with Fragile X. I am thrilled to be here with each of you and look forward to building on the wonderful work you have accomplished through the Foundation.

Over the next 90 days I plan to put a special emphasis on listening and learning from all of you. It is my belief that the most effective leaders are the ones who have a clear understanding of the communities they serve. Once I have a clear understanding of the Fragile X community, I will put my 20+ years of non-profit leadership experience to work, and together, we will work to strengthen our current mission and build upon our collective success.

Recently, we received some disheartening news. The announcement of another failed trial comes as a disappointment to the entire community. While upsetting, we must look forward and embrace future opportunities. Advancements in science take time – and patience in this area is difficult. We must remember that one failed trial brings us another step closer to finding a successful one. The NFXF is committed to supporting you, your family, and the community on this journey.

As always, the Foundation’s mission is rooted in support, research, advocacy and awareness for Fragile X. As CEO, I will work tirelessly to move these key aspects of the NFXF forward. The Foundation is proud of what it has accomplished over the last 30 years and recognizes that now – more than ever – there’s a real need to build upon and strengthen the NFXF’s current mission.

Part of my plan is to communicate with you on a regular basis, so please watch your inbox for future email updates from me. I encourage you to email me and let me know how you feel about the future of the Foundation, and to tell me what topics you’d like to see addressed. I look forward to celebrating our accomplishments together, as we continue to move Fragile X forward.


Tony Ferlenda
CEO National Fragile X Foundation