Yearly Archives: 2019

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Sign-Up for In-District Congressional Meetings

By |2019-05-15T16:28:04-04:00May 15, 2019|Advocacy|

Advocating for Fragile X families when members of Congress and their staff are in their home districts is key for three reasons: 1) You don't have to travel; 2) You generally have more time with them; 3) You underscore this is important to their constituents

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

By |2019-05-14T15:13:49-04:00May 14, 2019|Keeping You Informed, Research, Treatment and Intervention|

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.

Fiscal Year 2020 NICHD Funding Letter

By |2019-04-30T14:18:37-04:00Apr 30, 2019|Advocacy, Research|

We work closely with several groups to help on common public policy and funding goals. These partnerships are key to our impact and an important leg in our advocacy stool. Like we say, Together, We're Stronger. One of these key partnerships is the Friends of the NICHD. The NICHD is the National Institute for Child Health and Human Development. It is one of the institutes at the National Institutes of Health (NIH) and funds most of the Fragile X research at NIH. The Friends work together to support, overall, the funding level for NICHD, which flows down to each of the research areas, including Fragile X.

Two New Fragile X Research Papers Now Available

By |2019-04-24T13:39:26-04:00Apr 24, 2019|Research|

Two recently published, peer-reviewed Fragile X research papers are now available on our website: Voice of People with Fragile X Syndrome and Their Families: Reports from a Survey on Treatment Priorities, and Best Practices in Fragile X Syndrome Treatment Development.

Were New Fragile X Genes Discovered?

By |2019-04-24T14:44:13-04:00Apr 24, 2019|Keeping You Informed, Research|

A conversation with David L. Nelson, Ph.D., a Professor at Baylor College of Medicine and a member of the NFXF Scientific Advisory Council. He is a co-discoverer of the FMR1 gene and the repeat expansion mutation that causes fragile X syndrome. He is answering questions about a recent study published in the journal Molecular Psychiatry and an accompanying press release about the paper from Northwestern University’s Feinberg School of Medicine. The headline of the press release claims, "New Fragile X Genes Discovered."

The Friendship of Julian and Jonah

By |2019-04-23T09:55:57-04:00Apr 15, 2019|Faces of Fragile X|

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.

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