My Fragile X Advocacy Journey

By |2023-01-18T15:48:10-05:00Jan 11, 2023|Advocacy|

NFXF Director of Community Empowerment, Missy Zolecki, shares her recent experience as a consumer reviewer for the Department of Defense Peer Reviewed Medical Research Program

Study: Aging in Toolbox

By |2022-06-01T16:03:42-04:00May 26, 2022|Opportunities for Families|

Researchers around the country are conducting a study to better understand cognitive profiles in adults with intellectual disability. This study is an extension of the ongoing Toolbox Study, which is aimed to optimize cognitive assessment tools for children and young adults with intellectual disabilities.

NFXF Webinar: 2021 Industry Updates

By |2021-10-07T14:11:53-04:00Sep 20, 2021|Research|

We held an NFXF Webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.

PFDD Meeting Community Forum

By |2021-01-22T14:03:23-05:00Jan 21, 2021|Research|

The Patient-Focused Drug Development (PFDD) meeting on Fragile X syndrome is just around the corner! We need caregivers and self-advocates to participate to make this a valuable meeting. This will help you understand what to expect and what the goal is and how to share your story.

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