Gregg Harper, Fragile X dad, former member of Congress for Mississippi's 3rd Congressional district, offers a message to all Fragile X families following the 2020 election, looking forward to NFXF advocacy in 2021.
Because of the hard work of NFXF advocates over the past 20 years, decision-makers in Congress know what Fragile X is. Being present, persistent, and problem-solving is what gets things done in Congress.
The International Fragile X Premutation Registry will help us learn about the Fragile X premutation and will build community and develop a group of individuals interested in participating in research. Learn more in this video from Dr. David Hessel of the University of California, Davis MIND Institute.
Participants of this study will explore what information is considered most important to recently diagnosed fragile X premutation carriers. Open to premutation carriers 18 and over who were diagnosed sometime since January 2018.
Kaylynn Shuleski, a master’s in genetic counseling candidate, is conducting a research study to explore the concerns and challenges caregivers may face when planning long-term supports and living arrangements for their adult children with Fragile X ...
We’re always looking for new ways to share and raise awareness about Fragile X, life with Fragile X, and the individuals and families it affects. Here we talk with Laura Dooling and her life with three cousins with Fragile X syndrome.
As the option to do telehealth visits opened up over the past six months, we have gathered information to help you make the most of your online visit for your child with Fragile X syndrome, whether they are a young child or an adult.
The 5th Annual Bike to X Out Fragile X is in the books and another success in raising support and awareness of Fragile X in Iowa. Nancy Carlson, the NFXF Heartland Chapter leader and Fragile X mom tells us all about it.