Kelly Piacenti and Jerry Hulick joined us for the next topic of the NFXF Webinar Series - Top Financial Mistakes to Avoid for Special Needs Dependents. They shared common financial decisions that could impact your loved one's future benefits and supports.
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
The Genetics of Fragile X can be confusing. We’ve developed a series of handouts to help explain how changes in the FMR1 gene happen, how Fragile X is inherited, and what CGG repeat ranges mean for individuals and families.
Susan Howell, Rena Pressman, Marisa Vomvos, and Kate Shelly joined us for a one-hour Q & A discussing the Genetics of Fragile X.
Hear updates about the NIH-funded Fragile X Centers of Excellence, which support research to improve the diagnosis and treatment of Fragile X syndrome and its related conditions.
In December 2024, the NFXF put on a webinar discussing gene therapy and the perspectives from those in the FX community. During this webinar, expert Dr. David Hampson laid the groundwork of understanding what gene therapy is, followed by three different groups - The Patrick Wild Centre, Mt. Siani Hospital, and the NFXF - presenting on their community surveys, which all aimed to understand the perspectives on gene therapy from the Fragile X community.
Tracy Stackhouse, MA, OTR/L, Lauren Moskowitz, PhD, Jennifer Epstein, PsyD, and Missy Zolecki joined us for a one-hour Q & A discussing Navigating Challenging Behaviors.
Barb Haas-Givler, MEd, BCBA, Cora Taylor, PhD, Nicole Tartaglia, MD, Tracy Jordan, PhD, and Vicki Wilkins, MD joined us for a one-hour Q & A discussing Females with Fragile X Syndrome.
Dr. Elizabeth Berry-Kravis and Dr. Walter Kaufmann joined us for a 45-minute webinar where they presented on two of the "top 10 most-cited articles" in the American Journal of Medical Genetics Part A. Presentations were then followed by a moderated Q&A.
David Hessl, PhD, joined us for a 45-minute webinar where he presented the results of a longitudinal study focusing on executive function changes in people with the FMR1 premutation. The presentation was followed by a moderated Q&A.
Join us for the Financially Empowering the Fragile X Community Through ABLE Accounts webinar with Mark Raymond Jr. & John Finch.
Kelly Piacenti joined us for the next topic of the NFXF Webinar Series -10 Basic Financial Steps for Special Needs Caregivers. She shared information to help caregivers get started in preparing for the financial future of their loved one with Fragile X.
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
Drs. Deborah Barbouth, Emily Allen, Reymundo Lozano, and David Hessl joined us for a one-hour Q & A discussing the Fragile X Premutation.
Dr. Craig Erickson joined us for a 45-minute webinar where he presented the results of a single-dose medication study in FXS and then answered questions during a moderated Q&A.
