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About Dany Petraska

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So far Dany Petraska has created 14 blog entries.

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