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So far Dany Petraska has created 15 blog entries.

Study: Family Relationships and Parenting of Children with FXS

The UC Davis MIND Institute is currently recruiting study research participants. The study’s goal is to better understand the ways in which characteristics of mothers and fathers and relationships within the family influence the language learning environment of young boys with Fragile X syndrome.

By | 2019-10-28T15:45:01+00:00 Oct 22, 2019|Opportunities for families|Comments Off on Study: Family Relationships and Parenting of Children with FXS

Early Development of Young Children with Fragile X in North Carolina

RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.

By | 2019-10-11T10:15:58+00:00 Sep 18, 2019|Opportunities for families|Comments Off on Early Development of Young Children with Fragile X in North Carolina

Two New Fragile X Research Papers Now Available

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.

By | 2019-04-24T13:39:26+00:00 Apr 24, 2019|Research|Comments Off on Two New Fragile X Research Papers Now Available

Behavioral Issues in FXS+ASD

Studies involving the impact of an ASD co-diagnosis in FXS have to date relied mostly on parent-reported data and/or smaller sample populations. But thanks to the registry and longitudinal database FORWARD—the Fragile X Online Registry With Accessible Research Database—plus standardized clinician- and parent-reported data from 25 Fragile X clinics, we now have access to samples large enough to include a breakdown of findings by age groups.

By | 2019-05-20T20:08:10+00:00 Apr 11, 2019|Behavior|Comments Off on Behavioral Issues in FXS+ASD

Meet Riley Lynch

My husband and I were told Riley would never walk, talk, or do much of anything. One doctor went so far as to say he wasn’t even going to live. My husband and I ignored all the comments and continued to advocate for Riley.

By | 2019-05-30T19:14:16+00:00 Dec 1, 2018|Real Life Stories|Comments Off on Meet Riley Lynch