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Webinar: Adults in Fragile X Syndrome

By |2021-02-12T13:43:55-05:00Dec 10, 2020|Blog, Webinar|

Dr. Elizabeth Berry-Kravis discusses the value of the FORWARD database for understanding problems that face adults living with Fragile X syndrome. We also talk about how families of adults can contribute to FORWARD and our understanding of adults with FXS by doing a research-only remote visits with a FORWARD clinic to increase the data pool for adults with FXS in FORWARD.

Female Power to Fight COVID-19 with Marcia Braden

By |2020-08-20T18:55:17-04:00May 8, 2020|Webinar|

Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.

Estate Planning: Special Needs Planning for Individuals and Caregivers

By |2020-05-02T16:22:12-04:00Oct 18, 2019|Financial Planning, Webinar|

In this webinar, 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, 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, are also discussed.

Lets Talk Married with (Fragile X) Children

By |2019-09-27T10:27:13-04:00Nov 16, 2018|Education, Webinar|

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.

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!

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