Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 24
Announcing FY 2024 federal research funding opportunities across six award categories available for all Fragile X-associated conditions and disorders.
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 23
Announcing FY 2023 federal research funding opportunities across six award categories available for all Fragile X- associated conditions and disorders.
Jay Souder Takes On New Role as NFXF Ambassador
With his board term now concluded, Jay has graciously stepped into our first-ever NFXF Ambassador position, helping us further build on the many relationships he established during his tenure.
Friends of Fragile X Continues Support for the NFXF
A special thank you to Joy and David Justus and the Friends for Fragile X for their continued support of the National Fragile X Foundation. They announced $70,000 in donations to Fragile X and Autism [...]
[VIDEO] NFXF Rings the NYSE Opening Bell
We were invited to the New York Stock Exchange to ring the opening bell, giving us the amazing chance to raise awareness for Fragile X.
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.
My Last Marathon is my First of Something Else…
[mpc_image preset="preset_2" image="22344" image_size="700_thumb" image_opacity="100" effect="none" image_hover_opacity="100" overlay_background="rgba(255,255,255,0.35)" overlay_enable_lightbox="true" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="900" animation_in_delay="300"] In March of 2015, as I crossed the finish line of my last marathon, I said to anyone who could [...]
We’re Going Virtual: Update your Address Books!
The National Fragile X Foundation is closing the doors to our brick and mortar office, and our new mailing address will be located in Washington, DC. So please, update your address books! The biggest reason [...]
A New World of Fragile X Resources
The communications world is moving faster than ever now that you can access information right at your fingertips, whether by smartphone, tablet, or computer on your lap or your desk. That’s why the National Fragile [...]
A Fond Farewell to the FX Community
My first Fragile X case was in graduate school in 1984. A young man, about to be married, had a brother with Fragile X syndrome, and he wanted genetic counseling prior to his wedding. The first rumblings of "transmitting males" were arising so we imparted on him a small risk to be some sort of carrier, with no symptoms, and to be at risk for grandchildren with FXS. Even then, that was pretty advanced stuff, straying from the usual X-linked inheritance that previously reassured unaffected males that they could not pass on the disorder.
Meet our new Development Manager: Julie Stutzman
Julie Stutzman is the new Development Manager at the National Fragile X Foundation. If you have any questions regarding fundraisers or grants which benefit the Foundation, you can reach Julie at fundraisers@fragilex.org. I am thrilled [...]
Welcome to Your New National Fragile X Foundation Website!
We know from years of feedback that the website serves as a useful and important resource for many newly diagnosed individuals and families as well as longtime members of the Fragile X community. Early in [...]
Welcome Sharon Kidd to our team
We'd like to welcome Sharon Kidd, PhD to our team at the NFXF. Sharon joined us a few weeks ago and will serve as the National Coordinator of the Fragile X Clinical & Research Consortium's [...]
NFXF Introduces its new logo family and first tagline
The National Fragile X Foundation introduces its new logo family and its first tagline moving the foundation forward! The logo family stands modern, appealing and crisp. It highlights the NFXF’s human services emphasis. It provides [...]
Our Fragile X World adds over $7,000 to NFXF
We've previously announced Our Fragile X World through our social media accounts, our Fragile Xtras e-newsletter and the NFXF Quarterly. Our Fragile X World is a community of families and researchers dedicated to using survey [...]