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 [...]
NFXF Survey: What Aspects Have the Greatest Impact on Lives of People with FXS?
The National Fragile X Foundation is conducting a short five-minute survey to find the aspects of Fragile X syndrome (FXS) that have the greatest impact on the lives of people with FXS and their families/caretakers. [...]
Fragile X Pumpkin Carving Contest
The First 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. The details: Carve a pumpkin [...]
Where is the Hope?
Getting a diagnosis is hard. It’s really hard. There has been nothing else like it in my life and I cannot imagine there ever will be. It made me sad … really sad.
Enter the 2017 Rare Artist Contest by EveryLife Foundation
EveryLife Foundation is holding the Rare Artist Art Contest and we encourage you to enter! All members of the rare disease community throughout the world – including patients, caregivers, family, researchers and medical professionals – are [...]