The NFXF Blog
Keynote: Clinical Trials in Fragile X Syndrome — Presentation
This keynote session explore completed and active clinical trials relating to Fragile X syndrome. Presented by Elizabeth Berry-Kravis, Craig A. Erickson, and Randi J. Hagerman.
Starting and Monitoring Medications in Fragile X Syndrome — Presentation
Learn how to navigate medication strategies and approaches for children with FXS. Presented by Karen Regan, RN, and Nicole Tartaglia, MD.
Health Concerns for Women Who Carry an FMR1 Premutation — Presentation
This presentation explores health conditions for women who carry an FMR1 premutation for Fragile X syndrome. Presented by Emily Allen, PhD.
Dads Helping Dads With Will Bridges — Presentation
Calling all fathers, papas, daddies, pop, and dads—Will Bridges discusses raising a child or children with Fragile X syndrome, followed by questions from the audience.
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 Marner Family Hosts 3rd Annual Golf Outing in Support of NFXF
The 3rd Annual Quad Cities Fragile X Golf Outing on June 25, 2022, at the Byron Hills Golf Course in Byron Hills, Illinois, was a huge success — in spite of the threat of a downpour!
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!
EXPERIENCE Clinical Trials in Fragile X Syndrome
Shionogi's clinical trials for males aged 9–45 living with FXS with a molecular genetic confirmation FMR1 >200 CGG repetitions testing a new drug zatolmilast.
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.