DOD grant awarded for a FXTAS trial

By |2023-11-01T11:34:13-04:00Sep 1, 2023|Advocacy, Blog|

PureTech Health has been awarded a DOD grant of up to $11.4 million from the DOD for their trial of LYT-300, oral formulation of allopregnanolone, in people with Fragile X-associated tremor/ataxia syndrome (FXTAS).

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

The ABLE Employment Flexibility Act

By |2023-03-11T21:03:15-05:00Jan 13, 2022|Advocacy|

The ABLE Employment Flexibility Act (H.R. 4672) permits employers to contribute to an employee’s ABLE account instead of a 401(k) – including an employer’s match. By saving it in the ABLE account it will not adversely affect most means-tested federal benefits.

Advocacy Day Social Story

By |2021-02-09T16:22:39-05:00Feb 9, 2021|Advocacy|

Our own Jayne Dixon Weber pulled together a social story to use to help you and your self-advocate prepare for the NFXF Advocacy Day on February 24, 2021.

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