The NFXF Blog
2022 Industry Updates — Presentation
It's time for our 2022 FXS industry insights. Moderated by Hilary Rosselot, explore research, insights, clinical trials, discussions, and more with presentations by Stela Filipovic-Sadic from Asurage, Stephen O’Quinn from Zynerba Pharmaceuticals, Chad Coberly from Tetra Therapeutics, and Wayne Chadwick from Healx.
A Discussion and Q&A on the Fragile X Syndrome Research Landscape — Panel
How you can get involved in Fragile X research, featuring Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, David Hessl, Tracy King, Angel Wang, Jean Luan McColl, Laurie Bridges, Kara Frech, Emily Mack, Amie Milunovich, and Missy Zolecki, and moderated by Hilary Rosselot.
No Tears for Fears in the School Age Years: IEPs — Presentation
This family-friendly presentation focuses on considerations for school-age children with Fragile X syndrome. Presented by Kerrie Lemons Chitwood, Laura Greiss Hess, and Anne Hoffmann.
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
Tetra Therapeutics is conducting a two randomized, placebo-controlled studies of BPN14770/zatolmilast to learn about the experimental drug’s safety and efficacy for males ages 9-45.