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!
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.
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.
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?
This session builds on treatment best practices and makes the concept of visual supports tangible and applicable across ages and stages of life for those with FXS.
In this conference session, Dr. Deborah Hall provides a clinical overview of the diagnosis and treatment of FXTAS, including a summary of its clinical features, treatment options, and information about in-vitro fertilization.
Panelists look at and discuss FXS from the perspective of siblings in the household.
With our panel of experts Rebecca Shaffer, Lauren Schmitt, Tracy Murnan Stackhouse, Elizabeth M. Berry-Kravis, and Randi J. Hagerman.
