By Robby Miller
This year the National Fragile X Foundation is celebrating its 40th anniversary! It’s hard to believe we have already spent 40 years serving the Fragile X community -families living with Fragile X, their loved ones, and professionals alike- and I think I speak for our entire team when I say we look forward to serving the community for the next 40 years (and more!). As a tribute to the organization’s rich history, we are cataloging our journey in monthly blog posts. We have so many people and institutions in our history it’s hard to capture them all, but we will certainly do our best. Join us as we walk down memory lane, memorializing how the National Fragile X Foundation got to where we are today so we can dream together of the brightest possible tomorrow.
– Hilary Rosselot
How the NFXF has Contributed to the Global Fragile X Community
Studies have shown that Fragile X exists in all populations and in all countries. The NFXF has played a key role in the global community of Fragile X families and professionals throughout the entirety of its existence, including working in partnership and alongside with many other Fragile X patient advocacy organizations, clinicians, and researchers.
One of the most popular ways the NFXF engages the global Fragile X community is through our biennial conference, which brings together numerous families and professionals from around the world.
In collaboration with other professionals like NFXF co-founder Dr. Randi Hagerman, NFXF team members have supported and encouraged international groups in organizing their own patient advocacy organizations and Fragile X clinics.
Many of these groups have utilized the NFXF website as a source for current and understandable information on treatment and intervention, and since language barriers can present challenges, the NFXF has always welcomed other Fragile X organizations to freely translate its content when building their own websites. All we ask is they cite us in their translation process!
Over the years, the NFXF has organized an ongoing series of meetings with our friends and colleagues in Canada and Mexico to discuss cross-border issues and how all three countries can best serve their own populations. The NFXF has also expanded its Fragile X Clinical & Research Consortium to include international members. The NFXF is also part of the leadership of the International Fragile X Premutation Registry.
The NFXF is now an associate member of FraXI, which celebrates and supports those living with Fragile X Syndrome and Fragile X Premutation Associated Conditions around the world. You can learn more about FraXI by visiting their website: www.fraxi.org
The NFXF will continue to work closely with its friends and partners around the world. Differences may create tensions between countries, but the NFXF has never forgotten that, when it comes to Fragile X, we are one worldwide Fragile X community!
about
Robby Miller
Robby has spent over 50 years helping children with special needs, their families, and the professionals who work with them. Robby is particularly interested in how families learn about, access, and receive meaningful services from competent professionals, organizations, and institutions. This interest led to his co-founding the Fragile X Clinical & Research Consortium, also known as FXCRC. In his spare time, you’ll find Robby singing and playing rhythm guitar in a rock band with his pals.