In this webinar, we learned how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefitsl, 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, were 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.
As part of the NFXF’s ever-increasing focus on services for adults, we are pleased to bring you this 30-minute slide and audio presentation by Dr. Marcia Braden, titled, “Moving from Pediatrics to Adult Care.” [...]
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 word-for-word [...]
3:00 PM Eastern | 2:00 PM Central 1:00 PM Mountain | 12:00 PM Pacific Clinical research is a scientific investigation about human beings. It can be interventional or [...]
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.
As your child gets older, there are many decisions to be made. One of the biggest decisions is determining the best living situation for your young adult. Jayne Dixon Weber will be presenting some [...]
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!
The 'Individualized Education Program, also called the IEP, is a document that is developed for each public school child who needs special education. The IEP is created through a team effort, reviewed periodically. Learn how to best advocate for your child and work with her/his instructors to get the best education.
Our very own founder, Dr. Randi Hagerman of the UC Davis MIND Institute, joins us to discuss issues in Fragile X premutation carriers. Needless to say, she is a major force in research for Fragile X and one of the biggest names in our field! Join us for a presentation and some time for Q&A!
A concern many parents have for their children is whether or not their children will be able move out of the house and to live on their own. The process that mother and CSN leader Anita Inz went through was a difficult challenge, but now her son lives happily in an independent living community with support. She joins us for our upcoming webinar to talk about her experience and her son’s’ current living situation, to help give you an idea of how to navigate the world of independent living.
Our favorite duo, Mouse & Tracy of Developmental FX, join us to discuss Fragile X, autism and behavior. As always, they provided insight and wonderful advice to our audience - and their presence is always a delight!