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

The NFXF Blog

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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.

Study: Our Fragile X World Registry

By |Apr 21, 2020|

Our Fragile X World collects data from families using online surveys and in-person studies. Topics covered include sensory or behavioral challenges, health care experiences, and the impact of Fragile X on families.

How Do We Cope with the Current Circumstances

By |Apr 14, 2020|

In this new recording, Marcia Braden discusses strategies for daily living with COVID-19. She discusses how anxiety can fuel behavior, and she gives ideas on how to set up your day and accommodations you can make to help keep anxiety at a minimum.

How To’s of Sensory Diets in Fragile X Syndrome

By |Apr 13, 2020|

How To's of Sensory Diets in Fragile X Syndrome is the new video for this special time from Tracy Stackhouse from Developmental FX. A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day. 

My Child is Home… Now What?? Play Skills

By |Apr 7, 2020|

In this webinar, Rebecca Shaffer guides us through some pointers about how to build play skills while your children are at home, and some great resources for thinking through different play opportunities while they’re at home.

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