Katie Clapp

Kicking Off Our 2024 Giving Season With Gratitude and Hope

November 14, 2024

FRAXA’s 2024 Annual Appeal begins with a $100K gift from the Berg and Schatz families, funding new Fragile X research teams and advancing a cure.

Fragile X Syndrome and Cancer Research: Unexpected Links and Opportunities for Collaboration

April 11, 2023

Discover unexpected links between Fragile X Syndrome and cancer. Studies show people with Fragile X have much lower cancer rates. Explore new opportunities for collaboration in this promising research.

A Note of Thanks and Hope on This Giving Tuesday

November 29, 2022

Fragile X research matters. Each discovery brings us closer to treatments for autism and other brain disorders. Thanks to you, we have hope.

Centers for Collaborative Research in Fragile X Receive $25 Million Over Next 5 Years

October 6, 2020

National Institutes of Health (NIH) has announced funding for three Centers for Collaborative Research in Fragile X. The centers will receive $25 million over the next 5 years. Funding for the centers comes from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institute of Mental Health (NIMH), and the National Institute of Neurological Disorders and Stroke (NINDS).

Dan Vershbow, Mary Higgins Clark, Michael Tranfaglia, Katie Clapp

A Tribute to Mary Higgins Clark

February 5, 2020

Mary Higgins Clark, beloved author and Fragile X advocate, passed at 92. Her $1M gift in 1997 helped put FRAXA on the map for research.

President Clinton celebrating Children's Health Act

Federal Funding for Fragile X Research Faces Snags

February 21, 2019

We in the Fragile X community have our advocacy work cut out for us to restore levels of federal funding for Fragile X research! Both of the main federal funders – the National Institutes of Health (NIH) and the Department of Defense (DOD) are letting Fragile X research lapse!

#GivingTuesday 2018 – Thanks to you!

November 30, 2018

You did it! The Fragile X community raised over $50K on #GivingTuesday—matched by our Board! Thank you for fueling our annual appeal.

Can CRISPR Cure Fragile X Syndrome?

February 28, 2018

CRISPR/Cas9 was used by MIT researchers to remove the molecular tags that keep the mutant gene shut off in Fragile X syndrome neurons and resulted in some of them producing protein normally. Much work is being done right now, with exciting new discoveries coming at a fast and furious pace.

FRAXA funds 1 million in Fragile X research

Fragile X Cure One Step Closer with FRAXA Support of $1 Million in New Research

April 26, 2016

4 Countries – 10 Teams – $1 Million for finding new treatment targets, to pinpointing outcome measures for future clinical trials, to attempting to reactivate the gene which is silenced in Fragile X syndrome, these innovative scientists will bring us closer to a cure.

Spreading Sunshine

April 11, 2012

We’re deeply grateful to Doris Buffett and her Sunshine Lady Foundation for donating over $3M to FRAXA and inspiring Fragile X families.

Results of First Fenobam Trial in Adults with Fragile X Published

July 1, 2009

We are pleased to announce the publication of positive results of a Phase IIa clinical trial of fenobam in Fragile X. Fenobam belongs to a class of compounds known as mGluR5 antagonists. Neuropharm, a specialty pharmaceutical company based in the U.K., received Orphan Drug Designation in the US in 2006 for fenobam in the treatment of Fragile X, after acquiring rights to relevant data on the compound from FRAXA. This trial was conducted in the US by Drs. Randi Hagerman of the UC Davis MIND Institute and Elizabeth Berry-Kravis of the RUSH University Medical Center, and initial results were first announced last summer.

3 Researchers Honored at FRAXA Investigators Meeting

October 4, 2008

Over 150 scientists from around the world gathered at FRAXA’s 2008 Investigators Meeting to share discoveries and speed treatments for Fragile X syndrome.

Iryna Ethell, PhD, at University of California

Researchers Propose Minocycline to Treat Fragile X

October 4, 2008

This team has found that an available drug called minocycline, an inhibitor of mmp9, might also be used to treat Fragile X. Clinical trials later tested this.