2025 NIH Fragile X Centers of Excellence — Webinar
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.
NFXF Webinar Series: Gene Therapy & the FXS Community: A Review of Community Surveys
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.
Navigating Challenging Behaviors — Webinar
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.
Females with Fragile X Syndrome — Webinar
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.
Lunch & Learn Series: “Mosaicism Type and Cognitive & Behavioral Functioning Among Males with FXS” and “Sleep Problems in FXS: Cross-Sectional Analysis of a Large Cohort”
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.
Lunch & Learn Series: FMR1 Carriers Report Executive Function Changes Prior to FXTAS: A Longitudinal Study
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.
Financially Empowering the Fragile X Community Through ABLE Accounts — Webinar
Join us for the Financially Empowering the Fragile X Community Through ABLE Accounts webinar with Mark Raymond Jr. & John Finch.
10 Basic Financial Steps for Special Needs Caregivers — Webinar
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.
Peer-Reviewed Medical Research Program’s FY 24 Funding Opportunities for Researchers — Webinar
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
I Have the Fragile X Premutation…Now What?— Webinar
Drs. Deborah Barbouth, Emily Allen, Reymundo Lozano, and David Hessl joined us for a one-hour Q & A discussing the Fragile X Premutation.
Lunch & Learn Series: Single-Dose Medication Study Results in Fragile X Syndrome
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.
2024 NIH Fragile X Centers of Excellence — Webinar
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.
Introductory Discussion on Estate Planning — Webinar
We hosted an introductory discussion on bequests, wills, trusts, life insurance, and IRA transfers. The panel provided insight on navigating the complexities of wealth transfer, ensuring your legacy is preserved and your loved ones are well cared for.
Multidisciplinary Treatment of Fragile X Syndrome (FXS) — Webinar
Drs. Craig Erickson, Laura Hess, Kerrie Chitwood, and Rebecca Shaffer joined us for a one-hour Q & A discussing the benefits of a multidisciplinary team.
Fragile X-associated Tremor/Ataxia Syndrome — Webinar
Drs. Deborah Hall and Peter Todd joined us for an informative webinar on the topic of Fragile X-associated Tremor/Ataxia syndrome (FXTAS).