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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.

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.

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.

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