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 NFXF has continually adapted to the times when it comes to the best ways to communicate with the Fragile X community.
Thankfully, we’ve come a long way since the day when FXS was jokingly referred to as “Fragile WHATSyndrome?!” In the 1990’s, 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 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.
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.
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 [...]
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!
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 [...]
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.
What would you like people to know about you? I've been in nonprofit leadership roles for the last 23 years — as both a volunteer, board member, and employee. Small- to mid-sized organizations with a compelling, human services mission, like the NFXF...
As this year rushes to a close, I want to take a moment to tell you how grateful I am to be a part of the Fragile X community. I’ve learned so much from each of you – your determination, your commitment and your passion to make the lives of your families the best they can be is my daily inspiration....
The NFXF Board of Directors accepted the resignation of Robby Miller at its regular board meeting in Detroit on October 12, 2013. Miller will continue to work at the Foundation through December 31, 2013. Have [...]
Meet Jeffrey Cohen, new interim executive director of the National Fragile X Foundation. Cohen, who succeeds Robby Miller, has a long association with the Foundation. He joined the NFXF Board of Directors in 1996 and [...]
The Team discusses plans for the future. As the NFXF grows, the foundation’s team members have become spread out coast-to-coast, California to Massachusetts. So we love it when once a year we have [...]
We've put together a special infographic that you can share with your friends to in turn share with their friends and family. It shows the many ways Fragile X can affect impact a family. We hope it helps you continue to spread awareness!
We hope everyone has a wonderful Mother's Day today. We'd like thank everyone who participated in our calls for submissions. It is an honor to serve families with such dedicated mothers! [youtube]http://www.youtube.com/watch?v=3xYpcP86hNU[/youtube]