NFXF

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So far NFXF has created 664 blog entries.

The Friendship of Julian and Jonah

My son has Fragile X Syndrome and I often felt sad that friendship -- which I value enormously -- was something Julian didn’t even notice. He didn’t miss it; I missed it for him. After all, wishing for friends for your kid is pretty universal. Inclusive schools and communities are great on a societal level, but maybe not enough on a personal level.

By | 2019-04-15T10:35:47+00:00 Apr 15, 2019|Faces of FX|Comments Off on The Friendship of Julian and Jonah

The Philippines Join the International Fragile X Movement

I recently completed a 10-day trip to the south of the Philippines (Davao) and the north (Manila). This being a second trip to the Philippines, and once again involving a team of experts from the MIND Institute, the focus was on training Filipino professionals in assessment, intervention, and patient advocacy.

By | 2019-04-12T15:36:44+00:00 Apr 10, 2019|International|Comments Off on The Philippines Join the International Fragile X Movement

Adults with FXS Needed for AZD7325 Trial

We are asking you and other people with FXS to be in this research, because AZD7325 may be helpful for treatment of FXS, but it needs to be tested to be sure. We hope to learn more about the medicine’s safety and if it works on symptoms of FXS.

By | 2019-04-08T14:55:16+00:00 Mar 29, 2019|Opportunities for families|Comments Off on Adults with FXS Needed for AZD7325 Trial

Helping Fragile X Families in Colombia

With a number of colleagues from the UC Davis MIND Institute in California, including Dr. Randi Hagerman, and colleagues from the Asociación X Frágil Colombia, I just completed a 10-day trip throughout Colombia including Cali, Medellin, Bogota, Buqa and Ricaurte (the small, isolated rural town with ten times the typical prevalence of Fragile X). Our work involved numerous talks at medical centers and well-over 75 meetings with individual families.

By | 2019-03-12T13:01:40+00:00 Mar 12, 2019|Research|Comments Off on Helping Fragile X Families in Colombia

Clinical Trial CONNECT-FX: ZYN002 Gel

This study will evaluate the efficacy and safety of ZYN002, a clear cannabidiol (CBD) gel that can be applied to the skin (called transdermal application) twice a day for the treatment of behavioral symptoms of Fragile X syndrome (FXS).

By | 2019-03-13T09:49:01+00:00 Dec 7, 2018|Opportunities for families|Comments Off on Clinical Trial CONNECT-FX: ZYN002 Gel

8 Tips on Transitioning Your Child to Adult Services

Parents and other caregivers must consider many factors as young people with Fragile X syndrome approach the transition from high school to adulthood. Here we present eight tips based on research from Morgridge College of Education at the University of Denver.

By | 2018-12-19T12:30:01+00:00 Dec 5, 2018|Treatment and Intervention|Comments Off on 8 Tips on Transitioning Your Child to Adult Services

Lets Talk Married with (Fragile X) Children

Licensed Marriage and Family Therapist Diane Simon Smith discusses the amount of stress that is often placed upon a marriage when a couple has a child (or children) with fragile X syndrome. Many parents may worry that even the strongest marriages may buckle – or worse – under the intense demand of raising a child with special needs.

By | 2018-11-16T15:26:53+00:00 Nov 16, 2018|Education, Webinar|Comments Off on Lets Talk Married with (Fragile X) Children

CRISPR, a New Genome Editing Tool: Could it Work for Fragile X-Associated Syndromes?

Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2500 each through the Summer Student Fellowship Research Fund. This award is meant to introduce undergraduate students, or students [...]

By | 2017-12-13T18:50:17+00:00 Dec 13, 2017|Research, Summer Student Fellowship, Summer Student Fellowship Reports|Comments Off on CRISPR, a New Genome Editing Tool: Could it Work for Fragile X-Associated Syndromes?
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