Dr. Grace Francis from George Mason University is conducting an online survey to explore factors that affect the expectations for individuals with intellectual or developmental disabilities (IDD), including Fragile X syndrome (FXS), after they finish school.
The Manoach Lab at Massachusetts General Hospital is conducting a research study to explore brain activity during sleep and sensory processing in individuals living with Fragile X syndrome (FXS).
Although there are currently no options for approved or experimental gene therapies for FXS, gene therapies in other diseases and conditions do exist and are helping people today! Read the blog to see some examples of gene therapy in the real world!
Gene therapies are being developed at a rapid rate. Although there are currently no FDA-approved or interventional gene therapies for FXS, the future has never looked brighter for treating the root cause of FXS!
In June 2024, NIH published RFA-HD-25-002: Centers for Collaborative Research in Fragile X and FMR1-Associated Conditions. If you or someone you know are researching FXS and/or FMR1-associated conditions, this could be a great funding opportunity for you!
Help the NFXF - share your thoughts on gene therapy.
Researchers at the University of Memphis and Cincinnati Children's Hospital Medical Center are conducting a research study exploring the relationship between barriers and the FXS screening process among family members.
Researchers at the University of Maryland are looking to understand how children with Fragile X syndrome (FXS) and other intellectual disabilities grieve the loss of a loved one. If you are the parent or guardian of a child with FXS or another intellectual disability who has experienced the death of someone in their life when they were 5-17 years old, researchers want to talk to you.
The University of Washington's Neurodevelopmental Language and Learning (NeuDLL) Lab is conducting research addressing how children learn words in stories and the skills that support learning. Participation is remote and can be completed from home. Sessions are scheduled at your convenience.
Dr. Connor Maltby, a 2022 Jr. Investigator, summarizes the Fragile X Premutation panel discussion at the NFXF's 18th International Fragile X Conference.
Dr. Kate Shelly, a 2022 Jr. Investigator, summarizes the Research Landscape panel at the NFXF's 18th International Fragile X Conference.
A publication was released this week summarizing one lab’s discovery that could lead to a future treatment for Fragile X- ASO therapy.
Researchers at the University of Arizona are recruiting adult men living with the Fragile X premutation for a study on language, executive function, and quality of life.
Allos Pharma Inc. received invaluable FDA feedback on the design of their Phase 3 trial for arbaclofen for the treatment of Fragile X syndrome.
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.
