The NFXF Blog
One Fragile X Experience: Carrier & Mom Answers FAQs — Video
Ilana Garber, a Fragile X carrier and mother of a child with Fragile X syndrome, shares her experience with Fragile X and offers her perspective to people interested in testing for themselves or their child.
Study: Transitioning to Adulthood with Fragile X syndrome
University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.
Carolyn and John Tomberlin Provide Matching Gift at International FX Conference Live Appeal
Carolyn and her husband John kicked off the Live Appeal at the NFXF International Fragile X Conference in July with a one-to-one matching challenge of up to $30,000.
Housing Options for Adults With Fragile X Syndrome — Webinar
Adult services may be limited and difficult to access, so how does a parent deal with that nagging question that keeps them up at night: What will happen when I’m gone?
Gregg Harper Reminds Us of the Importance of Year-Round Advocacy
Former Congressman and Fragile X Dad, Gregg Harper Reminds Us of the Importance of Year-Round Advocacy.
NFXF Western MA Chapter Hosts Cork and Cafe Fundraiser
After a two-year pause due to COVID, NFXF Western Massachusetts Chapter raises $4,000 at 4th annual wine tasting fundraiser.
Heartland Chapter Hosts Annual X-Strides Run/Walk Fundraiser
NFXF Heartland - Iowa | South Dakota Chapter raises $6,500 at its annual X Strides Run/Walk event at the Briarwood Gold Course in Ankeny, IA.
Healx Shares an update on their IMPACT-FXS trial
Healx updates the Fragile X Community About their Fragile X Program and the IMPACT-FXS trial. The IMPACT-FXS trial is closed and Healx plans to open a new FXS trial in 2023.
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome
The pandemic caused by the spread of the coronavirus disease (COVID-19), beginning in early 2020, had an impact beyond anything experienced in recent history. It is important to understand how this pandemic era has impacted school-aged children with FXS so that we may continue to successfully navigate the changes that come with living through a pandemic and to understand what we can improve in the case of a future pandemic.
Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome
Given the limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans.
Long-Term Follow-Up of Telehealth-Enabled Behavioral Treatment for Challenging Behaviors in Boys with Fragile X Syndrome
This study showed the significant impact that behavioral treatments can have on rates of challenging behaviors commonly exhibited by boys with FXS, particularly when parents are coached to implement the intervention with their child via telehealth.
Parent and Caregiver Perspectives towards Cannabidiol as a Treatment for Fragile X Syndrome
Some caregivers and parents of individuals with FXS have given CBD supplements to the individuals they care for and learning about their insights and experiences is important. This was the first study to learn more about their observations and opinions regarding CBD to treat FXS.