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).
Employment Strategies and Successes — Webinar
In celebration of National Disability Employment Awareness Month, we were joined by a dynamic panel that shared strategies and their individual employment successes! Meaningful employment is important to parents and self-advocates!
FORWARD-MARCH 2023 — Webinar
Drs. Elizabeth Berry-Kravis and Nicole Tartaglia presented updates about FORWARD-MARCH, followed by a Question and Answer session covering the specifics of the study.
2023 Industry Updates — Webinar
The NFXF hosted a Fragile X research updates webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
Reproductive Health — Webinar
Drs. Heather Hipp and Victoria Wilkins joined us for an informative webinar on the topic of Reproductive health. This is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning.
Education Strategies for Success — Webinar
Educational strategies are not just helpful for school-aged children! The one-hour Q&A panel discussion, moderated by Hilary Rosselot, includes panelists with expertise and suggestions to support individuals living with Fragile X throughout the lifespan!
Housing Options for Adults With Fragile X Syndrome: Parents Share Their First-Hand Experiences — Webinar
Adult housing options and support services may be limited and difficult to access. A group of parents shared their firsthand experiences supporting their loved one with Fragile X determine a suitable living situation.
Aging in Fragile X Syndrome — Webinar
Dr. Berry-Kravis presents a one hour Q&A about what we’ve learned from the FORWARD data on aging for individuals living with Fragile X syndrome.
Females with FXS: Strategies for Developing Executive Functioning and Social Skills — Webinar
Barb Haas-Givler presents a one-hour Q&A session on resources and strategies for the classroom, home, and community.
2023 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.
One Fragile X Experience: Carrier & Mom Answers FAQs — Video
Ilana Garber, a Fragile X carrier and mother of a child with Fragile X syndrome, shares her experience with Fragile X and offers her perspective to people interested in testing for themselves or their child.
Housing Options for Adults With Fragile X Syndrome — Webinar
Adult services may be limited and difficult to access, so how does a parent deal with that nagging question that keeps them up at night: What will happen when I’m gone?