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.
Carolyn and her husband John kicked off the Live Appeal at the NFXF International Fragile X Conference in July with a one-to-one matching challenge of up to $30,000.
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?
After a two-year pause due to COVID, NFXF Western Massachusetts Chapter raises $4,000 at 4th annual wine tasting fundraiser.
NFXF Heartland - Iowa | South Dakota Chapter raises $6,500 at its annual X Strides Run/Walk event at the Briarwood Gold Course in Ankeny, IA.
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.
Watch this segment from Lifetime’s daily morning show, The Balancing Act, “Behind the Mystery of Fragile X Syndrome: A Genetic Disorder That Can Cause Learning and Behavior Challenges.”
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.
This session discusses the approved medications available to support behavior conditions associated with fragile X syndrome.
Learn how Assistive Technology (AT) can be the vehicle affording the opportunity for a person with FXS to be more fully included in play, school, home, work, and the community.
Explore examples of recent announcements and headlines focused on treatment development in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, MD, PhD, and Craig A. Erickson, MD.
Learn about research and findings from a study understanding the impact of COVID-19 and the pandemic on children with FXS.
Hilary Rosselot moderates this discussion on medications for Fragile X with an expert panel that includes Drs. Elizabeth Berry-Kravis, Craig A. Erickson, Randi J. Hagerman, Reymundo Lozano, and Nicole Tartaglia.
