This summary gives a broad overview of the main themes discussed at the 5th International Conference on FMR1 Premutation in early 2023.
Learn more from Dr. Liz Berry-Kravis about the important updates to the Tetra trials to make participation easier!
Dr. Schmitt and the Cincinnati Fragile X Center are conducting a survey to learn about potential barriers and advantages of conducting research visits in the home.
The FXCRC met in Denver, CO to discuss the status of treatment in Fragile X syndrome. A half-day outcome measure meeting was held with representatives from the FDA, industry, the FXCRC and families living with FXS.
Drs. Elizabeth Berry-Kravis and Nicole Tartaglia presented updates about FORWARD-MARCH, followed by a Question and Answer session covering the specifics of the study.
The National Fragile X Foundation is proud to be part of the Everylife Foundation’s newest report, The Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study.
We asked our 2023 NFXF-funded Randi J Hagerman Summer Scholars to summarize their summer project in a 15-minute video presentation, and here they are!
Dr. Craig Erickson at Cincinnati Children’s Hospital Medical Center is conducting a clinical trial to learn about if medication can change the brain’s response to sound, which may be abnormal in FXS.
PureTech Health has been awarded a DOD grant of up to $11.4 million from the DOD for their trial of LYT-300, oral formulation of allopregnanolone, in people with Fragile X-associated tremor/ataxia syndrome (FXTAS).
NFXF Board Member Jed Seifert recently represented the NFXF at the CEO Commission's Hill Day. Jed shares his reflections on this powerful experience.
The NFXF is one of 215 organizations urging lawmakers to support the Accelerating Kids’ Access to Care Act. Every child deserves the best care—regardless of who they are, where they live, or their family’s income.
One of the most exciting advancements being done in Fragile XS research today is antisense oligonucleotide (ASO) therapy.
RECONNECT Trial Announces New AT-HOME/VIRTUAL Option for Participation
The Kelleher Lab at Purdue University is conducting an NIH-funded clinical trial called Project WellCAST. Project WellCAST aims to understand how to best support caregivers of children with rare neurogenetic conditions, including Fragile X syndrome.
Dr. Anubhuti Goel summarizes the Fragile X Syndrome Basic Science Research session at the NFXF's 18th International Fragile X Conference.
