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So far NFXF has created 671 blog entries.

Visual Perception Study

Researchers will be in the Pacific Northwest July 1-2, 2019 to schedule visits. Please submit your info below to be contacted about participating. We would like to invite you to participate in our [...]

By | 2019-06-12T21:17:54+00:00 Jun 12, 2019|Opportunities for families|Comments Off on Visual Perception Study

Purdue University: Brain and Behavior Study

Individuals with the Fragile X premutation are at an increased risk for depression, other psychiatric conditions, and developing Fragile X Tremor/Ataxia Syndrome (FXTAS). Our goal is to better understand the different mechanisms within the brain that contribute to the development of psychiatric conditions, including depression. Doing so will allow us to establish better prevention and intervention efforts within this population.

By | 2019-06-11T16:59:39+00:00 Jun 11, 2019|Opportunities for families|Comments Off on Purdue University: Brain and Behavior Study

Study on Language Development in Young Adults with Fragile X Syndrome

If you have a son or daughter with fragile X syndrome in or entering the last year of high school, you and your child are invited to participate in a research study being conducted by Dr. Leonard Abbeduto at the Laboratory on Language Development in Neurodevelopmental Disorders at the MIND Institute, University of California, Davis in collaboration with Dr. Jessica Klusek at the University of South Carolina and Dr. Julie Taylor at Vanderbilt University.

By | 2019-05-28T13:08:38+00:00 May 23, 2019|Opportunities for families, Research|Comments Off on Study on Language Development in Young Adults with Fragile X Syndrome

Canada: Metformin Clinical Trial

We are attempting to further assess Metformin’s safety, as well as the benefits of the drug, which has been shown to improve the symptoms and difficulties which individuals with FXS experience, including: delayed language/cognition, excessive eating, obesity, hypogonadism, and delayed puberty.

By | 2019-05-21T16:01:14+00:00 May 21, 2019|Opportunities for families|Comments Off on Canada: Metformin Clinical Trial

A Computer-based Intervention for Memory and Attention in Fragile X Syndrome

A research team from the UC Davis MIND Institute recently published findings from a study using a computer program called Cogmed to train memory, flexible thinking, and attention in children and adolescents with Fragile X Syndrome. Referred to as ‘executive function’ - memory, flexible thinking, controlling impulses, and attention are problems characteristic of individuals with Fragile X Syndrome. The computer program was employed with 100 children and adolescents with Fragile X Syndrome – presenting them with challenging visual and auditory tasks involving memory and attention and challenging them to think flexibly in order to complete those tasks.

By | 2019-05-14T15:13:49+00:00 May 14, 2019|Keeping You Informed, Research, Treatment and Intervention|Comments Off on A Computer-based Intervention for Memory and Attention in Fragile X Syndrome

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 | 2019-04-23T09:55:57+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
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