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 [...]
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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.
All of our webinars related to FXS and premutation for individuals and families.
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 [...]
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.
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 [...]
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.
Fragile X Info Series An Overview for Families & Providers An easy-to-understand summary to share with friends, family, and professionals. ENGLISH SPANISH [...]
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.
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 [...]