The NFXF Blog
Transitioning to Independence in Adulthood: What Helps? What Hurts? — Panel
A panel of experts present research-based information on the factors that promote or hinder the transition to independence of young adults with FXS after completion of high school and formal education. Panelists Leonard Abbeduto, Jessica Klusek, Angie Thurman, and Julie Lounds Taylor also take questions from the audience.
Emotional Regulation in Fragile X Syndrome — Presentation
Rebecca Shaffer discusses the signs of emotion dysregulation in Fragile X syndrome and ways to respond and practical strategies for families and caregivers.
Encouraging Early Communication: Strategies for Caregivers — Presentation
This presentation focuses on tools that caregivers can use to encourage communication development for individuals at early stages of development. Presented by Anne Hoffman from Rush University Medical Center.
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!