Clinical Trials From Start To Finish

By |2017-08-17T15:46:50-04:00Jul 24, 2017|Webinar|

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 ...

Genetics 101: Fragile X Inheritance

By |2017-06-24T23:58:33-04:00May 22, 2017|Webinar|

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.

Adult Living Situations and Fragile X

By |2017-03-31T15:11:00-04:00Mar 31, 2017|Webinar|

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 ...

Make a National Impact Through STAR Local Advocacy

By |2017-03-23T15:22:09-04:00Mar 23, 2017|Webinar|

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!

Individualized Education Programs with Dr Vicki Sudhalter

By |2017-02-21T20:39:28-05:00Feb 21, 2017|Webinar|

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.

Fragile X Premutation w Dr. Randi Hagerman

By |2017-02-01T13:10:11-05:00Feb 1, 2017|Webinar|

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!

Independent Living with Anita Inz

By |2016-03-23T13:46:02-04:00Mar 23, 2016|Webinar|

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.

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

By |2015-11-20T14:01:36-05:00Nov 20, 2015|Webinar|

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!

Let's Talk Fragile X Premutation Carriers and Health

By |2015-08-04T14:04:47-04:00Aug 4, 2015|Webinar|

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

By |2015-03-11T14:47:45-04:00Mar 11, 2015|Webinar|

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

By |2014-01-22T14:58:07-05:00Jan 22, 2014|Webinar|

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

By |2013-09-06T15:04:55-04:00Sep 6, 2013|Webinar|

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

By |2013-07-08T15:01:31-04:00Jul 8, 2013|Webinar|

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.

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