The NFXF Blog
2024 NIH Fragile X Centers of Excellence — Webinar
Hear updates about the NIH-funded Fragile X Centers of Excellence, which support research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
Baclofen-associated neurophysiologic target engagement across species in Fragile X syndrome
Authors: Carrie R. Jonak , Ernest V. Pedapati, Lauren M. Schmitt, Samantha A. Assad , Manbir S. Sandhu, Lisa DeStefano, Lauren Ethridge, Khaleel A. Razak, John A. Sweeney , Devin K. Binder and Craig [...]
Introductory Discussion on Estate Planning — Webinar
We hosted an introductory discussion on bequests, wills, trusts, life insurance, and IRA transfers. The panel provided insight on navigating the complexities of wealth transfer, ensuring your legacy is preserved and your loved ones are well cared for.
The National Fragile X Foundation — 1984: The Beginning
At the beginning of the 1980s, a young developmental pediatrician, Dr. Randi Hagerman, was building a career at Children’s Hospital Colorado. Her curiosity led her to some of the early papers on X-linked intellectual disabilities (in particular, those of Dr. Gillian Turner from Australia) and descriptions of what was still often referred to as Martin-Bell Syndrome.
Making Waves for Fragile X: The 7th Annual Fishing for a Cure Fundraiser
The annual Fishing for a Cure fundraiser, hosted by Joey Christoff in honor of his son Mitchell, was another great success in 2023! Check out the big fish and the big smiles.
Healthcare Experiences of African American Women with a Fragile X Premutation
Authors: Andy King, Nadia Ali, Cecelia Bellcross, Fabienne Ehivet, Heather Hipp, Jessica Vaughn, Emily G. Allen An estimated 1 in 291 women carry a Fragile X premutation (PM) and there is little evidence that [...]
Emotion Dysregulation in Fragile X Syndrome
By Mya Jones Authors: Rebecca C Shaffer, Debra L Reisinger, Lauren M Schmitt, Martine Lamy, Kelli C Dominick, Elizabeth G Smith, Marika C Coffman, Anna J Esbensen Summary: A large portion of individuals with Fragile [...]
Fragile X Research and Treatment Center at the UC Davis MIND Institute
The Fragile X Research and Treatment Center at the UC Davis MIND Institute includes a treatment clinic that sees patients who are not part of their research projects.
A Fragile X Christmas!
Denny and Marcia Haugen know how to throw a party! Their December 9, 2023, second annual Fragile X Christmas party in Waverly, Iowa, was a smashing success.
Multidisciplinary Treatment of Fragile X Syndrome (FXS) — Webinar
Drs. Craig Erickson, Laura Hess, Kerrie Chitwood, and Rebecca Shaffer joined us for a one-hour Q & A discussing the benefits of a multidisciplinary team.
FORE! Fragile X Annual Golf Event Raises over $250,000 for the NFXF!
The annual FORE! Fragile X golf event fundraiser, hosted by the Souder family, has raised over $250,000 for the National Fragile X Foundation. Thank you Jay, Anne and Alec - and your many supporters over the years!
Dentistry for Individuals with Intellectual Disability
Many families struggle with helping their loved ones with intellectual and developmental disabilities maintain good oral hygiene. We've pulled together some helpful resources on dentistry for families and medical professionals.