BENEFITING: National Fragile X Foundation
As my two years as President of the National Fragile X Foundation comes to a close, I depart with a bit of sadness, a lot of pride for how far we've come and an enormous amount of excitement for what lies ahead for the Foundation and the entire Fragile X Community.
"Aidan’s Story” and the anecdotes of our journey with Fragile X Syndrome are something you are familiar with which is why I am sharing this message with you. I struggle sending my message in this format but I HAVE had the opportunity to speak with most of you one-on-one in the past and certainly plan to do so, again, in the near future.
I wanted to take this opportunity to thank each of you for the years of listening to me, engaging with Aidan, helping me spread awareness about this disorder and helping to provide a safe and welcoming community where Aidan feels a significant sense of “belonging.” I have had the privilege of being involved with the National Fragile X Foundation since Aidan was diagnosed at age 2, when we immediately benefitted from the meaningful services of this wonderful organization. The Foundation provided us with important information about the disorder, places to turn to for expert, medical help and a place to find local families dealing with the same diagnosis, assuring us that we were not alone. Soon after, we began raising funds and awareness for the NFXF. A few years later, I had the great opportunity to join the board of directors, most recently, spending two years as Vice President and the last two as President. This vantage point has allowed me to watch and be a part of the tremendous growth of the Foundation, witness how it serves it’s many families and help lead the organization into the future. I am particularly proud of the Foundation’s expanded efforts into research, giving all of us in the FX community, increased hope that better treatments and a cure continue to get closer. But I’m also proud that while we wait for a cure, there is “Life” to deal with and the NFXF is the ONLY organization that helps guide families, like mine, through this “special life”. I will forever be appreciative of the role the NFXF has played in my family’s journey. And while my term may end, my work does not and here is where I hope you will continue to help. Please assist me in continuing to spread awareness about FXS. I hope you’ll continue to lend me your ear as “life” with Aidan carries on, down an uncertain path. If you’re especially touched by our story, I would be extremely honored if you’d consider a donation to help celebrate the end of my presidency but really to help me pass this role on to the outstanding leadership that awaits and continue the great work of the NFXF. I have never reached out to my friends and family for fundraising purposes and am hopeful you will consider helping acknowledge this point in my NFXF "career."
Thank you for taking time to read this and for considering how you might be able to help continue the great work of the National Fragile X Foundation.
National Fragile X Foundation