The NFXF Blog
Fragile X Research at the DOD
Thanks to the hard work of NFXF Advocates years ago, Fragile X is one of the authorized research areas at the Department of Defense's Congressionally Directed Medical Research Program (DOD CDMRP). Millions of dollars in [...]
A Blood Test for Autism? Not So Fast
Among families and professionals, in schools and therapeutic settings, there is already a great deal of confusion about the relationship between genetic test results and developmental diagnoses. We challenge the the notion that autism itself can be directly diagnosed through a blood test.
Help Guide Fragile X Research at NIH
Last year, the National Institutes of Health (NIH) funded $46 million in Fragile X research, an amount that has trended upwards in the past few years. Over the years, they have funded hundreds of millions [...]
Mosaicism in Fragile X Syndrome — Webinar Replay
From Brenda Finucane, a look at mosaicism in Fragile X syndrome presented to make genetics easier to understand.
What do you love about Fragile X?
[mpc_textblock content_width="100" font_size="16" font_line_height="1.7" margin_divider="true" mpc_tooltip__border_divider="true" mpc_tooltip__padding_divider="true"] At first, that might sound like a strange question. But, love is someone or something that touches you in your deepest place and warms your heart. Fragile [...]
Congress Passes the RAISE Act
Last night, Congress passed the RAISE Family Caregivers Act. The bill, introduced by Fragile X Caucus co-chair and parent, Rep. Gregg Harper, directs the Secretary of HHS to work with stakeholders from state and local [...]
Fishing for a Cure
Joey Christoff’s son, Mitchell, has Fragile X syndrome, and his wife and mother-in-law are carriers at risk of Fragile X-associated disorders. Caring for them and giving hope to other families is what drives Joey [...]
Participate in Market Research Opportunity
The NFXF is looking for 10 parents of children with a diagnosis of Fragile X syndrome, including both males and females, from all over the country, to participate in a market research opportunity related to [...]
Assessment of Glutamatergic System in Fragile X syndrome
Massachusetts General Hospital A research study at Massachusetts General Hospital The Massachusetts General Hospital Martinos Center is looking to enroll males with Fragile X Syndrome (FXS), 18 years of age or older, for a [...]
CRISPR, a New Genome Editing Tool: Could it Work for Fragile X-Associated Syndromes?
Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2,500 each through the Summer Student Fellowship Research Fund [Note: now the Randi J. Hagerman Summer Scholar Research [...]
Rockefeller University: Potential new treatment for Fragile X targets one gene to affect many
Above: Mouse brains with Fragile X Syndrome (lower) lose the ability to regulate proteins like Brd4 (green). Photo from The Rockefeller University. A new publication in the journal Cell describes efforts by two groups at Rockefeller [...]
Thanks Margaret and Marty! The 2017 NFXF Lifetime Achievement Award
[mpc_textblock content_width="100"]We started November giving thanks for a couple who have spent a lifetime helping the Fragile X community. Margaret and Marty Israel have been volunteering for the Fragile X community for 37 years. On [...]