Tetra Therapeutics Shares their BPN14770 trials
Tetra Therapeutics presented about their prior results and current BPN14770 trials during the 2022 Industry Updates keynote session at the 18th International Fragile X Conference.
American Academy of Pediatrics Hosts New Course on Fragile X syndrome
AAP/CDC course, "Identification, Management, and Caring for Children and Adolescents with Fragile X Syndrome" will be available for pediatricians and other healthcare professionals through August 1, 2025, on the AAP PediaLink platform.
Lifetime Channel Airs “Behind the Mystery of Fragile X Syndrome”
Watch this segment from Lifetime’s daily morning show, The Balancing Act, “Behind the Mystery of Fragile X Syndrome: A Genetic Disorder That Can Cause Learning and Behavior Challenges.”
Neuropsychological Changes in FMR1 Premutation Carriers and Onset of FXTAS
This is the first time that Fragile X premutation carriers have been tracked in a longitudinal study. This study provides evidence for early markers of FXTAS that may be helpful in eventually identifying the best candidates for early, preventive intervention.
Strategies to Improve Executive Functioning for School-Aged Girls with Fragile X Syndrome — Presentation
Jayne Dixon-Weber shares top takeaways from Barbara Haas-Givler's conference presentation strategies for improving executive functioning for girls with Fragile X syndrome
Fragile X Premutation Discussion — Panel
Panelists Drs. David Hessl, Emily Allen, Deborah Hall and Randi Hagerman share their expertise on the Fragile X premutation at the 18th International Fragile X Conference.
The NFXF Heartland Chapter Hosts Successful Summertime Fundraiser “Bike To X Out Fragile X”
The always popular Bike To X Out Fragile X fundraising event draws almost 70 riders for a unique bike ride through Des Moines and Waukee, Iowa. Learn more about their day.
In-District Advocacy Opportunity with Rare Disease Legislative Advocates
It's that time of year! Join other rare disease advocates for in-district meetings with your Congress members and staff. You can help represent the Fragile X community!
Opportunity to Learn More about the RECONNECT Trial at the International Fragile X Conference in July!
This event has passed. Stephen O'Quinn and the Zynerba team extend the opportunity to meet families at the 18th International Fragile X Conference and learn more about the RECONNECT trial.
The International Fragile X Premutation Registry: Building a Resource for Research and Clinical Trial Readiness
The first published publication from the International Fragile X Premutation Registry Advisory Committee. This International Fragile X Premutation Registry is an important first step and can serve as a useful tool for clinicians and researchers in the field.
The Brothers Who Bake D&J Doggie Delights
Meet David and Jason who together bake and sell dog treats. But that's not their only job: David works as a stocker at a grocery store and paints and exhibits his work at a local gallery. Jason works as a dishwasher and cart attendant and loves to swim.
Growing Awareness of Fragile X-Associated Conditions
On May 5, 2022, The Wall Street Journal Weekend Edition showcased an article called “The Surprising Legacy of a Genetic Disorder” by Dr. Anne Skomorowsky. The essay summarizes the history of Fragile X and [...]
The Use of “Retardation” in FRAXA, FMRP, FMR1 and Other Designations
Thanks to The European Fragile X Network, FMR1 now stands for fragile X messenger ribonucleoprotein 1, removing the reference to “mental retardation” which has long been outdated in common vernacular.
An Xtraordinary Employee: Corey Gershenson
Corey Gershenson lives with Fragile X syndrome. Thanks to his determination — and employers willing to embrace employees with disabilities — he also works two jobs and volunteers at Mercy Hospital in St. Louis.
Optimal Time Lags From Causal Prediction Model Help Stratify and Forecast Nervous System Pathology
Being able to identify and diagnose possible nervous system disorders by detecting gait problems 15 to 20 years before their clinical diagnosis could help advance treatment development and quality of life.