As I watched the new U.S. House of Representatives be sworn in today and elect Rep. Nancy Pelosi as its new Speaker, I was reminded, again, that we are fortunate to live in a country where we can change control in Washington in the voting booth, not with tanks in the street. And when change happens, it is peaceful outside the Capital and collegial inside.
Kara and Steve Frech received the diagnosis that both of their sons inherited Fragile X Syndrome in 2006. Kara and her mother attended their first NFXF International Fragile X Conference in St. Louis, MO. Filled with information, Kara integrated and applied that knowledge into successful strategies for each of her sons. The National Fragile X Foundation has continued to provide the most up to date information and education to help with daily living.
A peer-reviewed paper has just been published that discusses a variety of recommendations at the level of preclinical development, the transition from preclinical to human projects, family involvement, and multi-site trial planning. The recommendations are made with the vision that effective new treatment will lie at the intersection of innovation, rigorous and reproducible research, and stakeholder involvement.
If you have ever spent more than 5 minutes with Dillon Kelley, you know two things—you know about Fragile X and you know that, one day, Dillon Kelley will be a member of Congress.
Steve was diagnosed with FXTAS 8 years ago, and since then, he and his family have provided significant financial support to FXTAS programming at the NFXF. They are supporting our goal to build a worldwide consortium of FXTAS clinics to help improve the rate of diagnosis and the delivery of current treatments. This will also set us up to be ready to conduct future clinical trials for new treatments.
NFXF Advocates spend time advocating with Congress for Fragile X priorities we can all get behind and have a tremendous success record: Approximately $350/million per year in research. This wouldn’t get the attention it [...]
Autism spectrum disorder and Fragile X syndrome are often linked. Numerous small and parent reported studies have shown that a considerable percentage of individuals with Fragile X syndrome also carry a diagnosis of autism [...]
On Monday, October 29, 2018, Dr. Craig Erickson conducted his 6th annual webinar on medications for Fragile X syndrome. He discussed some ongoing studies and trials and then took questions for listeners about a variety [...]
Researchers at Our Fragile X World are inviting young adults with the full mutation of Fragile X between the ages of 18 and 40 to take part in a new survey. The survey asks about what things may be important to them when deciding [...]
From Jay Souder, NFXF Board President, on behalf of the National Fragile X Foundation: As a parent of an adult son with Fragile X syndrome, the news coming out of Pittsburgh that two of the [...]
Fragile X syndrome is the most common cause of inherited intellectual disability. The clinical variability of this syndrome is wide, particularly in females who initially were thought to be unaffected or carriers. Females have random [...]
The Second Annual Fragile X Pumpkin Carving Contest is here! The mission is to raise awareness of Fragile X by carving the NFXF X into a pumpkin and displaying it, along with an awareness [...]
Early Check is a new research study, led by RTI International and a group of distinguished partners, is now available for newborn babies in North Carolina. Fragile X syndrome is included in the screening. From [...]
Looking for a FXTAS clinic? A directory of clinics around the world is now available here. All of the clinics are part of the International FXTAS Consortium (IFC). The IFC was co-founded in 2017 by [...]
X Strides Heartland Walk/Run 2018 Fundraiser Delivers Awareness and Fun in Support of Fragile X Families
Over 140 runners, walkers, and volunteers converged at the beautiful Briarwood Golf Club on Saturday, September 29, 2018, for the first annual X Strides Heartland event, organized by Nancy Carlson and Jeff Sexton. The [...]