By NFXF|2020-09-13T10:45:29-04:00Dec 1, 2019|
Toileting Issues in Fragile X Syndrome Consensus of the Fragile X Clinical & Research Consortium Introduction: Toilet training, which can be challenging even in the general population, is characteristically an [...]
By Dany Petraska|2023-05-30T14:36:12-04:00Apr 13, 2023|
Printable Resources Treatment Recommendations (English) — Expert recommendations for the three primary Fragile X-associated disorders—FXS, FXTAS, and FXPOI. Treatment Recommendations (Spanish) — Recomendaciones de tratamiento de expertos para los tres trastornos primarios asociados [...]
By Hilary Rosselot|2023-05-15T12:50:36-04:00Oct 25, 2022|Blog, Research, Research Results|
The pandemic caused by the spread of the coronavirus disease (COVID-19), beginning in early 2020, had an impact beyond anything experienced in recent history. It is important to understand how this pandemic era has impacted school-aged children with FXS so that we may continue to successfully navigate the changes that come with living through a pandemic and to understand what we can improve in the case of a future pandemic.
By Hilary Rosselot|2023-01-25T16:21:53-05:00Sep 21, 2022|
Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives By Reymundo Lozano, Talia Thompson, Jayne Dixon-Weber, Craig A. Erickson, Elizabeth Berry-Kravis, Sara Williams, Elizabeth Smith, Jean A. Frazier, Hilary [...]
By Contributor|2023-02-14T16:58:05-05:00Sep 7, 2022|Daily Living|
Jennifer Epstein provides an overview of methods that support the practice of readiness skills, and helps caregivers understand the common hurdles affecting skill attainment specific to Fragile X syndrome.
By Dany Petraska|2023-03-16T19:51:10-04:00Dec 8, 2020|
Fragile X Info Series An Overview for Families and Providers You can download the PDF to print and share, and the full text is also on this page. [...]
By Hilary Rosselot|2023-05-15T13:03:51-04:00Jul 20, 2020|Research Results|
Research Summary // FORWARD data on 633 individuals with FXS filled the gap for much needed information on when children with FXS learn bladder and bowel toileting skills.
By Dany Petraska|2022-11-02T08:49:40-04:00May 6, 2020|
Consensus of the Fragile X Clinical & Research Consortium Transition to Adult Services for Individuals with Fragile X Syndrome Reading Time: 38 min.—|—Last Updated: Dec. 2021—|—First Published: Dec. 2021—|—Download PDF Services [...]
By NFXF|2021-12-09T11:21:16-05:00Mar 6, 2020|Community, International Fragile X Conference|
Emily Mack remembers her first time at an NFXF Int'l Fragile X Conference. “The best part was that it was the first time where I truly felt like everyone around me just understood, without explanation of who we were, what Fragile X was, and the highs and lows that it can bring to everyday.” Read her story.
By Dany Petraska|2019-09-03T14:25:19-04:00Feb 4, 2019|
Early Childhood Developmental and Educational Guidelines for Children with Fragile X Syndrome Consensus of the Fragile X Clinical & Research Consortium For all children within the early childhood age [...]