Yearly Archives: 2019

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Faces of Fragile X: Eric

By |2020-01-06T19:18:10-05:00Dec 23, 2019|Faces of Fragile X|

Eric has Fragile X syndrome, and his mom shares about what Eric is like. "To know Eric is to love him! I love Eric’s compassionate heart and sense of humor. He keeps us laughing." Read more.

Can I use CBD to treat Fragile X syndrome?

By |2019-12-16T11:01:02-05:00Dec 13, 2019|Blog|

Craig Erickson, MD, the Director of the Cincinnati Fragile X Research and Treatment Center was asked by the National Fragile X Foundation (NFXF) to discuss the use of cannabidiol (CBD) for people with Fragile X syndrome (FXS) - to answer the questions around, Can I Use CBD to treat Fragile X syndrome.

The NIH Fragile X Research Plan

By |2020-12-31T11:53:15-05:00Dec 9, 2019|Archives|

The NIH just released their Fragile X Research Plan, which identifies research priorities and aims to coordinate research efforts. We have pulled a few key excerpts.

What Advice Do You Have for SSI

By |2019-12-06T15:30:08-05:00Dec 6, 2019|Blog|

we are developing materials for adults with Fragile X syndrome. One area we receive a lot of questions from parents on is advice for applying for Supplemental Security Income (SSI) for their 18-year-old son or daughter.

Faces of Fragile X: Ross and Brooks

By |2019-11-20T17:24:29-05:00Nov 20, 2019|Faces of Fragile X|

Brooks and Ross are two cool guys-------they are polar opposites, though. Brooks loves his music (loud) and Ross does not like music. Brooks is tough and rugged and Ross is more fragile. Brooks loves being around people and Ross is a loner.

Faces of Fragile X: Bryan

By |2020-07-16T16:43:32-04:00Nov 15, 2019|Faces of Fragile X|

Meet Bryan. He has Fragile X syndrome. His sister says, he has interests and needs similar to everyone else. We like to tease each other, go to sporting events, and go swimming.

Premutation Conference Brings Together World’s Leading Experts

By |2019-10-25T11:04:21-04:00Oct 25, 2019|Carriers, Research|

The 4th annual Fragile X premutation conference was held in the Netherlands in September. Entitled the Fourth International Conference of FMR1 Premutation: Basic Mechanisms, Clinical Involvement and Therapy, it was a gathering of researchers from around the globe to share their current research on Fragile X premutation disorders and think about what is next. The NFXF supported the conference.

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.

What a successful year for NFXF Advocates

By |2019-11-15T10:57:57-05:00Oct 11, 2019|Advocacy|

NFXF Advocates have had a very successful year! Our advocacy efforts focus on ensuring substantial federal investments in Fragile X research, policies that create opportunities for those living with Fragile X to have the best possible life, and an awareness in Congress of Fragile X. Here are some highlights of our efforts this year.

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