Webinars

We offer free monthly 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.

National Fragile X Foundation webinars are one of the many free educational resources offered to families. Your donation helps to provide these in the future.

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Recordings

All registrants, including those who were unable to attend, are emailed a link to the recording within a week. At the same time, a recording will be made available to the public via our website and YouTube.

Capacity

There is limited capacity to the webinar rooms. Registration is open to a slightly larger amount than capacity to compensate for absent registrants. Please arrive 30 minutes before the webinar and remain online to guarantee your seat.

Clinical Trials From Start to Finish

Clinical research is a scientific investigation about human beings. It can be interventional or observational. Most of what we know about medicine, and all of the treatments we use, are the result of clinical research. We’ve invited Sharyn Lincoln, MS, and Katherine Pawlowski of Boston Children’s Hospital to speak with us about how Clinical Research Trials work, what it takes to participate in them and what happens after the study.

Strategies for Executive Functioning Deficits in Females with Fragile X Syndrome

Barbara Haas-Givler of Geisinger Health System. Executive functioning (EF) is best thought of as a set of skills. This group of skills is used to organize and direct behavior towards goals as well as help control, regulate, adjust and self-monitor our behavior. Executive functioning behaviors include: inhibition, set-shifting/cognitive flexibility and to some extent overlap with working memory.

Getting stuck, refusal, not starting or finishing work are possibly in response to tasks that need well-developed executive functioning. At times, deficits in EF skills look like the student “won’t do” rather than “couldn’t do.” At a practical level, EF translates into skills such as prioritizing, goal selection, planning, organizing and getting started. These skills are crucial to school success, social relationships and daily living skills.This presentation will provide an overview of executive functioning skills and deficits. There will be a discussion of how EF deficits effects schoolwork, social skills and daily living skills. The emphasis will be on describing and selecting practical strategies to teach school-aged girls with fragile X who have executive functioning deficits.

This webinar and its recording are provided free thanks to the generous support of our donors and volunteers. If you’d like to continue more events like this, please consider donating to the National Fragile X Foundation.

Genetics 101: Navigating the Many Twists and Turns of Fragile X Inheritance

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 about the genetics of Fragile X. 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.

This webinar and its recording are provided free thanks to the generous support of our donors and volunteers. If you’d like to continue more events like this, please consider donating to the National Fragile X Foundation.

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 will be presenting some living options for adults, and taking questions in our latest NFXF webinar.

Jayne Dixon Weber has been a member of the NFXF team since 2007 and currently serves as the Director of Education & Support Services. She has two children, an adult son with Fragile X syndrome and a daughter, who is an occupational therapist. In addition to assisting with the development of the NFXF’s “Adolescent and Adult Project,” Jayne authored the book “Transitioning ‘Special’ Children into Elementary School” and is the editor for the book “Children with Fragile X Syndrome: A Parents’ Guide.”

Make a National Impact Through STAR Local Advocacy

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!

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 again to answer questions about Fragile X and behavior on this special Valentine’s Day edition of NFXF webinars!

Tracy is co-founder of the Developmental FX in Denver, Colorado. She is a leading pediatric occupational therapist involved in clinical treatment, research, mentoring, and training regarding OT intervention and neurodevelopmental disorders, especially Fragile X Syndrome and autism. She has a Bachelor’s in Occupational Therapy from Colorado State University. She has a master’s degree in developmental psychology/developmental cognitive neuroscience from the University of Denver.

Sarah, fondly known as “Mouse,” is co-founder of Developmental FX. She has a Master’s Degree from the University of Montana in Speech Pathology. She has worked in the fields of Fragile X syndrome and neurodevelopmental disorders for more than 25 years. She provided speech pathology services to the Denver Fragile X Treatment and Research Center at The Children’s Hospital in Denver, Colorado, and accompanied Dr. Randi Hagerman to the UC Davis MIND Institute to initiate its program.

Individualized Education Programs with Dr Vicki Sudhalter

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.

Dr. Vicki Sudhalter has worked with individuals with Fragile X Syndrome for over 30 years. Until her retirement, Dr. Sudhalter was the Head of the Clinical Psycholinguistics Laboratory at the Jervis Clinic located within the New York State Institute for Basic Research in Developmental Disabilities. She participated in the Jervis Clinic Fragile X Clinic which is located on Staten Island, NY.

Dr. Sudhalter was the recipient of the Jarrett Cole Clinical award and the Lifetime Achievement Award, both, from the National Fragile X Foundation in recognition of her work with children and families with FXS.

It has been her joy and privilege to work with the amazing families of children and adults with FXS.

Fragile X Premutation w Dr. Randi Hagerman

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!

Dr. Hagerman is medical director of the UC Davis MIND Institute and director of the Fragile X Research and Treatment Center. She has more than 20 years of experience in the field of neurodevelopmental disorders and is an internationally respected leader in fragile X research including fragile X syndrome, a genetic condition that is the leading cause of inherited intellectual disability and the leading single-gene cause of autism.

Dr. Hagerman has written more than 200 peer-reviewed articles and numerous book chapters on neurodevelopmental disorders, and has written several books on fragile X. They include a 3rd Edition of Fragile X Syndrome: Diagnosis, Treatment, and Research which was published in 2002 by Johns Hopkins University Press, and Neurodevelopmental Disorders: Diagnosis and Treatment, published by Oxford University Press in 1999.

Transitions Into Adulthood with Laurie Yankowitz, EdD

Independent Living with Anita Inz

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.

Lets Talk Married with (Fragile X) Children

Licensed Marriage and Family Therapist Diane Simon Smith discusses the amount of stress that is often placed upon a marriage when a couple has a child (or 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 breakdown, differing expectations of each other and of their children, differing coping and parenting styles. Well discuss specific strategies for enhancing a sense of unity and connectedness between partners.

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

Ur 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!

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 having the premutation. Only in recent years has research been making headway into the reality of premutation carrier issues.

Let’s Talk Addressing Caregiving Needs for a Loved One with FXTAS

Louise W. Gane, MS, joins us to review the emotional, psychosocial and long-term planning issues associated with caring for a loved one diagnosed with FXTAS. Examples and inspiration are provided by those who have or are experiencing life with FXTAS. This webinar focuses on those who care for individuals diagnosed with FXTAS.

Let’s Talk Behavior and FXS

Dr. Marcia Braden, licensed psychologist and noted Fragile X expert, leads our latest “Let’s Talk” Webinar on Behavior. She begins with a presentation on “How Neurobiology Affects FXS Behavior”, followed by a Q&A session from members who were part of the webinar.

Let’s Talk! Back to School

Back-to-school can be a time of high anxiety not only for children but for parents and staff, too. NFXF team members Jayne Dixon Weber and Holly Usrey-Roos will help families prepare for this often hectic time in this interactive webinar. Topics will include the making of a “Back-to-School” toolkit, along with discussion on preparing teachers and students for a new school year, transitions, schedules, talking to students and faculty about FXS, and working through fire drills and lockdowns.

Let’s Talk Medication For Fragile X Syndrome

Given the great number of medications in the market that address specific issues with fragile X syndrome, the world of treatment can be tough for parents and other caregivers to navigate. One of the most frequent questions they ask is, “Which medication is best for my child?”

The National Fragile X Foundation is pleased to address this topic in the first of its series of “Let’s Talk” webinars. “Let’s Talk Medication for Fragile X Syndrome” features Dr. Craig Erickson, a noted Fragile X expert and medical director of the Fragile X Clinic in Cincinnati, Ohio.