The NFXF Blog
The Genetics of Fragile X Disorders
Many thanks to Brenda Finucane for this webinar to help each of us understand the genetics of Fragile X. Brenda is a professor and licensed genetic counselor at Geisinger’s Autism and Developmental Medicine Institute in Lewisburg, PA.
Medications for Fragile X Syndrome
Dr. Craig Erickson answers listener questions on medications for Fragile X syndrome.
The National Fragile X Foundation Joins Forces with the New CEO Commission on Disability Employment
The National Fragile X Foundation joined forces with the new CEO Commission on Disability Employment so we can work together to eliminate barriers to employment for all individuals with a disability.
Research Study: Power of the Point — Predictors of Early Language Development in Fragile X Syndrome
The Development in Neurogenetic Disorders Lab at the University of Illinois at Urbana-Champaign is conducting a research study to learn about what skills support early language development.
COVID-19 Vaccines and Fragile X and Dr. Erickson Answers Your Medication Questions
Two important videos from Dr. Craig Erickson who discusses COVID-19 vaccines for individuals living with Fragile X premutations and full mutations, plus a second video on medications and Fragile X.
Jay Souder Takes On New Role as NFXF Ambassador
With his board term now concluded, Jay has graciously stepped into our first-ever NFXF Ambassador position, helping us further build on the many relationships he established during his tenure.
How Clinical Trials Work: From Start to Finish
A guide to better understanding of clinical trials, including how they work and how to become a participant.
Advocacy Day Social Story
Our own Jayne Dixon Weber pulled together a social story to use to help you and your self-advocate prepare for the NFXF Advocacy Day on February 24, 2021.
The Fragile X Premutation Registry is Now International
When we first launched the registry in November 2020, we weren’t yet able to accept non-U.S. registrants. There’s a lot of regulations and standards to work through on a project like this, but now we are truly living up to our name!
What are Federal Budgets and Why They Matter
What is the President's budget, is it important for Fragile X advocacy, and how does Fragile X research get funded? These are all answered here.
PFDD Meeting Community Forum
The Patient-Focused Drug Development (PFDD) meeting on Fragile X syndrome is just around the corner! We need caregivers and self-advocates to participate to make this a valuable meeting. This will help you understand what to expect and what the goal is and how to share your story.
What Does a New Congress Mean for Advocacy
As the Biden Administration takes office and Congress switches control, what does it mean for NFXF Fragile X Advocacy efforts?