Webinars

We offer free webinars to address some of the most frequently asked questions about Fragile X. Experts offer tips and other information you need to know. Family members, caregivers, and professionals are invited to attend. We hope you find them valuable.

Medications for Fragile X Syndrome

For our most recent webinar on medications, please see Webinar: Medication For Individuals With Fragile X Syndrome.

Special Needs Estate Planning

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. Viewers will understand the difference between a payback special needs trust and a third-party discretionary trust. Benefits such as SSI and Medicaid are also discussed.

Guardianship

In this webinar, you are guided in understanding if and when guardianship should be considered and the requirements to obtain it. Alternatives to guardianship, such as financial and health care powers of attorney that are less restrictive, are also covered. The different types of guardianship are explained, along with the process of establishing one in your state. Guardian responsibilities and limitations are also addressed. [Back to top]

NeuroNEXT Trial

Dr. Elizabeth Berry-Kravis presents information on the NeuroNEXT clinical trial. Watch to learn a wealth of information on the trial, the science behind it, and the answers to listeners’ questions. Learn more about the NeuroNEXT trial and whether you’re eligible to participate. [Back to top]

Moving from Pediatrics to Adult Care

This NFXF Webinar is geared toward professionals who are treating children with Fragile X syndrome and are considering transitioning a patient into adult care. Dr. Braden offers guidance based on her decades of experience working with this transition from childhood to adolescence to adulthood. [Back to top]

Fragile X Genetics — Mosaicism

Brenda Finucane, MS, LGC, associate director & professor at Geisinger ADMI, explains mosaicism, plus answers some burning genetics questions from the Fragile X community. [Back to top]

Autism Spectrum Disorder in Fragile X Syndrome

Numerous small and parent-reported studies have shown that a considerable percentage of individuals with Fragile X syndrome also carry a diagnosis of autism spectrum disorder. Individuals with a dual diagnosis of Fragile X syndrome and autism were reported to show greater cognitive and behavioral impairment. The first large-scale study — using FORWARD data — revealed a high percentage of autism in the Fragile X syndrome population. Findings also showed greater behavioral impairments as well as disparities between expected and observed behavioral treatment use, of those with a dual diagnosis when compared to those with Fragile X syndrome alone. [Back to top]

The Genetics of Fragile X-Associated Disorders

Fragile X-associated disorders include a wide range of physical, intellectual, and behavioral symptoms that can affect family members in many different ways. These conditions are passed down in families through expansions of the FMR1 gene. Even for genetics professionals, FMR1 inheritance is complex and confusing, so it’s no surprise that families often have questions. Whether you’re a newly diagnosed family or have been living with the diagnosis for several years, please join us as we speak with Brenda Finucane (Geisinger Autism & Developmental Medicine Institute, associate director and professor) about the nuts and bolts of Fragile X inheritance. [Back to top]

Adult Living Situations and Fragile X

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 presents some living options for adults and takes questions from the attendees. [Back to top]

FXS Autism and Behavior with Mouse and Tracy – Valentine’s Day Edition

Love is in the air! Our very good friends, Mouse and Tracy of Developmental FX, join us to answer questions about Fragile X and behavior on this special Valentine’s Day edition (but important and helpful year-round). [Back to top]

Transitions Into Adulthood with Laurie Yankowitz, EdD

[Back to top]

Independent Living with Anita Inz

A concern many parents have for their children is whether or not their children will be able to move out of the house and live on their own. The process that mother and Community Support Network 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 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. [Back to top]

Lets Talk Married with (Fragile X) Children

Licensed marriage and family therapist Diane Simon Smith discusses the amount of stress that is often placed on a marriage when a couple has a one or more children with Fragile X syndrome. Many parents may worry that even the strongest marriages may buckle — or worse — under the intense demand of raising a child with special needs.

Some issues we address are communication breakdowns, differing expectations of each other and the children, and differing coping and parenting styles. We also discuss specific strategies for enhancing a sense of unity and connectedness between partners. [Back to top]

Let’s Talk FXS, Autism & Behavior with Tracy & Mouse

Tracy Stackhouse and Sarah Scharfenaker join us to discuss Fragile X, autism, and behavior. As always, they provide insight and wonderful advice — and their presence is always a delight! [Back to top]

Let’s Talk Fragile X Premutation Carriers and Health

Fragile X premutation carriers have long expressed concern over issues they might be facing because of their premutation, and only in recent years has research been made headway into the reality of premutation carrier issues. [Back to top]