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Blog2020-09-08T11:03:26-04:00

The NFXF Blog

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2020 Fragile X Awareness Packets

By |Jul 1, 2020|

July is National Fragile X Awareness Month. To help you raise awareness we pulled together some materials that are free to download and use: posters, Zoom backgrounds, coloring sheets, flyer, and “Know Me” cards.

Zynerba Announces Results from CBD Gel Clinical Trial

By |Jun 30, 2020|

"These top-line data show promise for Zygel in some individuals with Fragile X syndrome. We look forward to seeing the next steps taken by Zynerba, and continue to be thankful for their thoughtful partnership and dedication to bettering the lives of those living Fragile X.” —Linda Sorensen, NFXF Executive Director

PIXI Study: Parent-Infant Fragile X Intervention

By |Jun 9, 2020|

RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.

NFXF 2020 Virtual Graduation Ceremony

By |Jun 6, 2020|

To honor all Fragile X self-advocates and siblings who are being promoted/graduating in 2020, we held a virtual graduation ceremony. Gregg Harper, former Member of Congress from Mississippi and a Fragile X dad, gave a commencement address. 

Female Power to Fight COVID-19 with Marcia Braden

By |May 8, 2020|

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.

A COVID-19 Social Story from NFXF

By |Apr 27, 2020|

The National Fragile X Foundation has created a social story to reflect the changing requirements that governments are enacting. There’s a lot of information — and misinformation — about COVID-19 out there, but there’s no doubt it’s impacted families in many, many ways.

How to Prepare for a Telehealth Visit

By |Apr 24, 2020|

Drs Rebecca Shaffer and Ernie Pedapati tell you how to prepare for your telehealth visit, including behavioral checkups. They are with Fragile X Clinic at Cincinnati Children's Hospital. Their advice is applicable to all visits.

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