Last Sunday morning I had the pleasure of joining several members of our board of directors as well as local New York City families as we came together for a conversation about the hopes, dreams, and future for Fragile X families. Joining us were event organizers Len Abbeduto and Elizabeth McBride of the UC Davis MIND Institute with special guests Randi and Paul Hagerman who were coincidentally celebrating their 45th wedding anniversary. It was fun to see them together and obvious they share a deep love and respect for each other.
As always, I enjoyed spending time with parents and professionals whose enthusiasm and commitment continue to inspire me. We are all part of a very special and caring community.
While I had several things to think about on the long flight home, the biggest takeaway for me from this delightful event was the reminder of the hallmark of the Fragile X community — our willingness to work together to Stand Up to Fragile X. The spirit of collaboration and partnership among the many researchers and treatment professionals who have devoted their careers to the field is strong evidence of the many advancements that have been made to help impacted individuals and families live their best lives — every day. Or at least as often as possible! 😊
The NFXF and the MIND Institute have always worked well together on a variety of initiatives — most recently the launch of the NFXF Biobank [later known as the NFXF Data Repository] that will have a tremendous impact on future FX research. We are proud to call each other partners and are working on many more opportunities to make a difference for you and your families. Let’s face it, Together, we really are Stronger!
My thanks to Len and Elizabeth for their kind invitation to this wonderful event and to Larry Krantz and Joyce Barber for being terrific hosts.
Best, Linda
Executive Director
