Webinar

/Webinar

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.

By | 2018-11-16T15:26:53+00:00 Nov 16, 2018|Education, Webinar|Comments Off on Lets Talk Married with (Fragile X) Children

The NFXF Conference, Research Opportunities, and a Fragile X Q&A

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 [...]

By | 2018-06-13T10:58:48+00:00 Jun 13, 2018|Webinar|Comments Off on The NFXF Conference, Research Opportunities, and a Fragile X Q&A

Clinical Trials From Start To Finish

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 [...]

By | 2017-08-17T15:46:50+00:00 Jul 24, 2017|Webinar|Comments Off on Clinical Trials From Start To Finish

Genetics 101: Fragile X Inheritance

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.

By | 2017-06-24T23:58:33+00:00 May 22, 2017|Webinar|Comments Off on Genetics 101: Fragile X Inheritance

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 [...]

By | 2017-03-31T15:11:00+00:00 Mar 31, 2017|Webinar|Comments Off on Adult Living Situations and Fragile X

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!

By | 2017-03-23T15:22:09+00:00 Mar 23, 2017|Webinar|Comments Off on Make a National Impact Through STAR Local Advocacy

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.

By | 2017-02-21T20:39:28+00:00 Feb 21, 2017|Webinar|Comments Off on Individualized Education Programs with Dr Vicki Sudhalter

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!

By | 2017-02-01T13:10:11+00:00 Feb 1, 2017|Webinar|Comments Off on Fragile X Premutation w Dr. Randi Hagerman

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.

By | 2016-03-23T13:46:02+00:00 Mar 23, 2016|Webinar|Comments Off on Independent Living with Anita Inz

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

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!

By | 2015-11-20T14:01:36+00:00 Nov 20, 2015|Webinar|Comments Off on Let's Talk FXS, Autism & Behavior with Tracy & Mouse

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.

By | 2015-08-04T14:04:47+00:00 Aug 4, 2015|Webinar|Comments Off on Let's Talk Fragile X Premutation Carriers and Health

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.

By | 2015-03-11T14:47:45+00:00 Mar 11, 2015|Webinar|Comments Off on Let's Talk Addressing Caregiving Needs for a Loved One with FXTAS
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