Dr. Elizabeth Berry-Kravis discusses the value of the FORWARD database for understanding problems that face adults living with Fragile X syndrome. We also talk about how families of adults can contribute to FORWARD and our understanding of adults with FXS by doing a research-only remote visits with a FORWARD clinic to increase the data pool for adults with FXS in FORWARD.
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.
How To's of Sensory Diets in Fragile X Syndrome is the new video for this special time from Tracy Stackhouse from Developmental FX. A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day.
In this webinar, learn how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefits, including understanding the difference between a payback special needs trust and a third-party discretionary trust. ABLE accounts and benefits, such as SSI and Medicaid, are also discussed.
Hilary Rosselot, the NFXF Director of Research Facilitation, gives advice and guidance to participating in research studies and clinical trials.
Many parents may worry that even the strongest marriages may buckle—or worse—under the intense demand of raising a child with special needs. Licensed marriage and family therapist Diane Simon Smith tackles this topic for couples raising children with Fragile X syndrome.
Dr. Marcia Braden on the difficulties associated with patients with Fragile X syndrome transitioning from a pediatric to an adult care provider.
NFXF Webinar Recap In case you don’t have time, or would prefer the information in written form, we are now providing NFXF Webinar recaps. These are summaries of the webinars, using paraphrases rather than ...
Whether you’re a newly-diagnosed family in the fragile X community or have been living with the diagnosis for several years, please join us as we speak with Brenda Finucane (Geisinger, ADMI Associate Director & Professor) about the nuts and bolts of Fragile X inheritance.
If you’re looking for a way to take action and make a difference for the Fragile X community, join our local advocacy program! NFXF Advocacy Day may be a once-a-year event, but Fragile X advocacy happens year-round and you don’t have to travel to Washington, DC to be a part of it! Our Washington Team will introduce you to the program, in which we train to volunteers visit their district and state offices to speak on behalf of the Fragile X community. Change can only happen when you get involved!
Love is in the air! Our very good friends, Mouse and Tracy of Developmental FX, join us again to answer questions about Fragile X and behavior on this special Valentine's Day edition of NFXF webinars!