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?
NFXF Western MA Chapter Hosts Cork and Cafe Fundraiser
After a two-year pause due to COVID, NFXF Western Massachusetts Chapter raises $4,000 at 4th annual wine tasting fundraiser.
Heartland Chapter Hosts Annual X-Strides Run/Walk 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.
Using Visual Strategies to Support Daily Function — Presentation
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.
Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome — Presentation
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.
Lifetime Channel Airs “Behind the Mystery of Fragile X Syndrome”
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.”
Sibling Perspective Q&A — Panel
Panelists look at and discuss FXS from the perspective of siblings in the household.
Behavior Discussion and Q&A — Panel
With our panel of experts Rebecca Shaffer, Lauren Schmitt, Tracy Murnan Stackhouse, Elizabeth M. Berry-Kravis, and Randi J. Hagerman.
Medication for Fragile X: Anxiety, Irritable Behaviors, and Aggression — Panel
This session discusses the approved medications available to support behavior conditions associated with fragile X syndrome.
Assistive Technology: Tackling the Trends and the Tried & True — Presentation
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.
Interpreting Clinical Trial Headlines and Announcements in Fragile X Syndrome — Presentation
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.
The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X — Presentation
Learn about research and findings from a study understanding the impact of COVID-19 and the pandemic on children with FXS.
Fragile X Medications — Panel
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.
How Many Times Is He Going to Ask That? Perseverative Questioning and Other Behavioral Inflexibility in FXS — Presentation
Dr. Lauren Schmitt, a licensed clinical psychologist with extensive training in cognitive functioning in individuals with neurodevelopmental disorders, discusses how behavioral inflexibility is likened to being stuck — a state in which the individual is unable to move on from a current behavior or thought.
Experts Discuss Fragile X-Associated Tremor Ataxia Syndrome (FXTAS) — Panel
Explore this premutation webinar to learn more about Fragile X and Associated Tremor/Ataxia Syndrome (FXTAS) with our expert panel: Peter K. Todd, MD, Randi J. Hagerman, MD, David Hessl, PhD, and Dr. Deborah A. Hall, MD.