Premutation Concerns

By |2023-01-30T14:56:32-05:00Jan 5, 2023|Blog|

A New Year. Here We Come! By Jayne Dixon Weber Ups and downs, challenges and rewards – life gives us all of these. This time of year can be challenging for all of us. [...]

All Love Threads — Clothing Designed to Benefit the Special Needs Community

By |2022-11-28T12:12:48-05:00Nov 22, 2022|Blog|

Since the birth of his brother Filippo, Guido Raponi has constantly looked for ways to help support the Fragile X and special needs communities. The idea for All Love Threads was born when he looked into his closet and saw a number of unworn, fundraising t-shirts and sweatshirts and saw an opportunity to create fashionable awareness clothing.

Together We Give

By |2022-12-01T09:35:34-05:00Nov 18, 2022|Blog, Giving Tuesday|

Help us help them by supporting our mission to serve all those living with Fragile X. Advocacy, education, research, and treatment with the community are at the heart of everything we do.

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

By |2022-10-25T15:34:06-04:00Oct 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.

Exploring Parents’ Concerns Regarding Long-Term Support and Living Arrangements for Their Children with Fragile X Syndrome

By |2022-10-25T15:29:28-04:00Oct 25, 2022|Blog, Research, Research Results|

Given the limited data regarding future planning specific to individuals with Fragile X Syndrome (FXS) and the growing population of this community, this study sought to explore the concerns and challenges caregivers of individuals affected by FXS encounter when considering long-term support plans.

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