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).
Drs. Deborah Hall and Peter Todd joined us for an informative webinar on the topic of Fragile X-associated Tremor/Ataxia syndrome (FXTAS).
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!
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.
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.
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.
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!
Dr. Michelle Tosin, a 2022 NFXF Junior Investigator, summarizes the Diagnosis and Treatment of Fragile X-associated Tremor Ataxia Syndrome session at the 18th International Fragile X Conference.
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.
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.
Barb Haas-Givler presents a one-hour Q&A session on resources and strategies for the classroom, home, and community.
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.
Jayne Dixon-Weber shares top takeaways from Barbara Haas-Givler's conference presentation on effective strategies to promote and support social skills for individuals with Fragile X syndrome.
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
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.
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.