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1 12, 2019

Toileting Issues in Fragile X Syndrome

By |2020-09-13T10:45:29-04:00Dec 1, 2019|Comments Off on Toileting Issues in Fragile X Syndrome

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 [...]

3 10, 2023

FORWARD-MARCH 2023 — Webinar

By |2023-10-25T17:22:52-04:00Oct 3, 2023|Webinar|Comments Off on FORWARD-MARCH 2023 — Webinar

Drs. Elizabeth Berry-Kravis and Nicole Tartaglia presented updates about FORWARD-MARCH, followed by a Question and Answer session covering the specifics of the study.

13 04, 2023

Printable Resources

By |2023-08-02T16:16:07-04:00Apr 13, 2023|Comments Off on Printable Resources

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 [...]

25 10, 2022

The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome

By |2023-05-15T12:50:36-04:00Oct 25, 2022|Blog, Research, Research Results|Comments Off on The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome

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.

21 09, 2022

Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives

By |2023-01-25T16:21:53-05:00Sep 21, 2022|Comments Off on Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives

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 [...]

7 09, 2022

Toilet Training Across the Lifespan — Webinar Replay

By |2023-02-14T16:58:05-05:00Sep 7, 2022|Daily Living|Comments Off on Toilet Training Across the Lifespan — Webinar Replay

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.

20 07, 2020

Toilet Training in Fragile X Syndrome

By |2023-05-15T13:03:51-04:00Jul 20, 2020|Research Results|Comments Off on Toilet Training in Fragile X Syndrome

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.

6 05, 2020

Transition to Adult Services for Individuals with Fragile X Syndrome

By |2022-11-02T08:49:40-04:00May 6, 2020|Comments Off on Transition to Adult Services for Individuals with Fragile X Syndrome

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 [...]

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