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 [...]
A publication was released this week summarizing one lab’s discovery that could lead to a future treatment for Fragile X- ASO therapy.
The Center of Health and Technology’s (CheT) Outcomes Division is conducting is conducting a survey to learn about [the most prevalent and impactful symptoms of FXS that the individual experiences, as reported by the caregiver.
Fragile X is one of the more complicated conditions to explain, so we are sharing 7 basic facts about the biology and genetics of Fragile X
Tetra Therapeutics Shares Details of the Now Enrolling FXS Trials in a Short Video.
Zynerba Pharmaceuticals shares why the RECONNECT trial with ZYN002 is being conducted in Fragile X syndrome
The Neurodevelopmental Disabilities Lab at Northwestern University is conducting a research study to learn about how the genes involved in Fragile X syndrome may play a role in language development, cognitive differences, and more.
The T-PAL Lab at the UC Davis MIND Institute is conducting a research study to learn about how we can best measure your child’s behavioral and cognitive functioning in their day-to-day life. Using an [...]
NFXF Director of Community Empowerment, Missy Zolecki, shares her recent experience as a consumer reviewer for the Department of Defense Peer Reviewed Medical Research Program
Former Congressman and Fragile X Dad, Gregg Harper Reminds Us of the Importance of Year-Round Advocacy.
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 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.
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.
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.
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.
