An (Oral) Story of the National Fragile X Foundation
Dr. Hagerman told a short story about how the National Fragile X Foundation came to be at this year’s NFXF International Fragile X Conference, and we want to share her story with you.
The People Who Are the NFXF
So many people - volunteers, team members, donors, advocates, including self-advocates, clinicians and clinic teams, researchers, therapists, educators, counselors, advisors and others - over the past 40 years have helped make the National Fragile X Foundation what it is today!
A Global Fragile X Community
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.
Legislative Advocacy
The National Fragile X Foundation has been advocating for research funding and for laws and regulations sensitive to the needs of the Fragile X community, for more than 25 years.
A 40 Year History of Supporting Research
The NFXF has worked hard over the past 40 years to increase our understanding of Fragile X-associated conditions and we will continue to do so in the years to come!
Improving Treatment Through Leadership of the FXCRC
Established in 2006, the NFXF Fragile X Clinical and Research Consortium is a network of over 30 clinics that specialize in Fragile X care.
NFXF International Fragile X Conferences
The NFXF International Fragile X Conference has grown significantly over the past 40 years, and remains profoundly impactful.
How the NFXF has Informed the Community Through the Years
The NFXF has continually adapted to the times when it comes to the best ways to communicate with the Fragile X community.
The 1990s and the NFXF Becoming a True National Organization
Thankfully, we’ve come a long way since the day when FXS was jokingly referred to as “Fragile WHAT Syndrome?!” In the 1990s, many changes were taking place as a result of the increased scientific study of Fragile X and how the growing body of knowledge was impacting the work of the Foundation.
The National Fragile X Foundation — The Early Years: 1984–1990s
The focus in the early years of the NFXF was to “get the word out!” During that time period, the inherited nature of Fragile X was not fully understood. However, early pioneers in the Fragile X world, such as Dr. Stephanie Sherman and Dr. Ted Brown, were steadily making progress in sorting out the genetics.
The National Fragile X Foundation — 1984: The Beginning
At the beginning of the 1980s, a young developmental pediatrician, Dr. Randi Hagerman, was building a career at Children’s Hospital Colorado. Her curiosity led her to some of the early papers on X-linked intellectual disabilities (in particular, those of Dr. Gillian Turner from Australia) and descriptions of what was still often referred to as Martin-Bell Syndrome.
Support the NFXF Through the Combined Federal Campaign
You can support the National Fragile X Foundation through the Combined Federal Campaign (CFC), the federal government's charitable giving program that automatically deducts your contributions to your charity of choice each pay period. According to [...]
So Much Happened in 2016 Thanks to You!
As we begin the new year, we want to take a moment to thank you for your incredible support in 2016! Because of you, we continued our mission to help all families living with Fragile X. Last year, we accomplished more than we could ever list in a single article so we want to share just a few highlights that happened around the nation because of you!
Message from NFXF President: It’s an Honor
Dear Fragile X Community, Sharing my family’s Fragile X story with you through the NFXF Annual Appeal was truly an honor. If you haven’t already, I hope you’ll take a moment to read through it and [...]
21st Century Cures Act Demonstrates Bi-Partisan Spirit
Closely following its passage (392-26 on Nov. 30) in the House of Representatives, the U.S. Senate took up the 21st Century Cures Act and enacted the law by an equally impressive margin (94-5) vote. The law’s next stop is President Obama’s desk, and the President has already made clear his support for the bill and his intent to sign it. Passage will mean nearly $5 billion of new funding for the National Institutes of Health (NIH) and $500 million for the Food and Drug Administration (FDA), along with a plethora of policy provisions that will bolster medical research.