Face of Fragile X: Logan
What would you like others to know about him? Logan is 10 years old and was diagnosed at 15 months old. It hasn’t been an easy road but with help from family, friends, and his teachers he has progressed and learned so much.
Faces of Fragile X: David
Meet our friend David. David likes the show Law and Order because they fight the bad guys. He had a lot of fun at last year’s Conference.
Faces of Fragile X: Patrick
What would you like others to know about him? Pat is funny and likes to laugh. He does not speak but is funny in his own way. As an example, if you ask, "How [...]
Faces of Fragile X: Avery
Avery is beautiful. She has the best curly hair around. She loves animals, routines, her neighbor friends, her cousins, and putting on makeup with her auntie. She is so smiley and always excited to see her cousin Elliott.
Faces of Fragile X: Nicholas
What would you like others to know about him? He is helpful and very patient when we drag him all over the place. What is your favorite thing about him? His smile is amazing and he is so fun to hang out with. If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be? People with Fragile X have a very genuine heart. School can be a challenge but if you stay involved you can make it through. Once you get through the school years it is easier for them to be themselves.
Male Self-Advocates’ Panel at the NFXF International Fragile X Conference
Watch the session with the male self-advocates at the 16th NFXF International Fragile X Conference.
Provide Comments on the NIH Strategic Plan
Please provide your comments on the draft NIH Strategic Plan for Fragile X.
NFXF Testimony to House Appropriations Committee
On April 9, 2019, the National Fragile X Foundation provided testimony to support Fragile X research funding at the Centers for Disease Control and the National Institutes of Health. Below is Linda Sorensen's written testimony.
‘Fishing for a Cure’ and Inspiration for Other Unique Fundraisers
The annual Fishing for a Cure fundraiser, hosted by Joey Christoff in honor of his son Mitch, is an example of inspiring and creative ways to raise money for Fragile X. Thank you Joey and Mitch!
Clinical Trial in Canada: Metformin
Researchers are testing the effectiveness of Metformin to help improve daily living for individuals with Fragile X syndrome. Individuals aged 6–25 who have been diagnosed with FXS may be eligible.
Fiscal Year 2020 NICHD Funding Letter
We work closely with several groups to help on common public policy and funding goals. These partnerships are key to our impact and an important leg in our advocacy stool. Like we say, Together, We're Stronger. One of these key partnerships is the Friends of the NICHD. The NICHD is the National Institute for Child Health and Human Development. It is one of the institutes at the National Institutes of Health (NIH) and funds most of the Fragile X research at NIH. The Friends work together to support, overall, the funding level for NICHD, which flows down to each of the research areas, including Fragile X.
Open Post-Doctoral Position in FMR1-related and ASD Research
The Waisman Center at the University of Wisconsin-Madison has an open position in the Post-Doctoral Training Program in Intellectual and Developmental Disabilities Research. This program has been supported continuously by NICHD since its inception in 1995, and over 95% of former trainees have obtained faculty and/or research positions relevant to IDD. The majority have successfully received extramural research funding.
NFXF Advocacy Day – Another Success
Advocacy Day 2019 is done, and by all measures, it was another success. Fragile X advocates visited 56 Senate offices and 61 House offices – all of their home districts. We had fun, connected with [...]
Kara and Steve Frech are Standing Up to Fragile X
Kara and Steve Frech received the diagnosis that both of their sons inherited Fragile X Syndrome in 2006 and soon after, Kara and her mother attended their first NFXF International Fragile X Conference in St. Louis.
Best Practices in Fragile X Syndrome Treatment Development
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.