advocacy Archives

Fragile X Advocacy Newsletter – April 2025

By Missy Zolecki|2025-04-18T10:24:23-04:00Apr 18, 2025|Advocacy, Blog|

Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!

ACTION ALERT:
Protect the Department of Education

By Missy Zolecki|2025-03-21T09:20:18-04:00Mar 21, 2025|Advocacy, Blog|

Action Alert- Protect the Department of Education to ensure continued protections for all students, especially members of the Fragile X community.

Advocate for Fragile X From Home

By Missy Zolecki|2025-03-24T12:47:22-04:00Mar 19, 2025|Advocacy, Blog|

Advocating from home is a key part of ensuring continued support for individuals with Fragile X. Let’s work together to make our voices heard!

Potential Impact of the Continuing Resolution on CDMRP/PRMRP Funding Opportunties

By Missy Zolecki|2025-03-14T11:38:44-04:00Mar 14, 2025|Advocacy, Blog|

The Congressionally Directed Medical Research Program could face a 57% reduction in funding with the proposed continuing resolution.

ACTION ALERT:
Advocate for Medicaid and the Fragile X Community

By Missy Zolecki|2025-02-19T15:28:06-05:00Feb 5, 2025|Advocacy, Blog|

Action Alert- Advocate for Medicaid protection and the Fragile X community.

Fragile X Advocacy Newsletter – October 2024

By Missy Zolecki|2024-10-08T16:19:04-04:00Oct 8, 2024|Advocacy, Blog|

Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!

A Reflection on the CEO Commission’s 2024 Hill Day

By Kristin Bogart|2024-10-02T20:11:44-04:00Oct 2, 2024|Blog|

NFXF Executive Director, Hilary Rosselot, and Advocacy Ambassador, Dillon Kelley, attended the CEO Commission for Disability Employment’s Employment Summit and Hill Day in September 2024. It was an inspiring, action-packed few days, and they are excited to share more about their experience and why it matters to the Fragile X community.

Fragile X Advocacy Newsletter – June 2024

By Missy Zolecki|2024-06-17T10:46:13-04:00Jun 17, 2024|Advocacy, Blog|

Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!

Fragile X Advocacy Newsletter – November 2023

By Missy Zolecki|2024-06-20T10:18:08-04:00Nov 14, 2023|Advocacy, Blog|

Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!

Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study

By Hilary Rosselot|2024-04-23T09:55:52-04:00Oct 2, 2023|Blog|

The National Fragile X Foundation is proud to be part of the Everylife Foundation’s newest report, The Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study.

DOD grant awarded for a FXTAS trial

By Hilary Rosselot|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).

A Reflection on the CEO Commission’s 2023 Hill Day

By Hilary Rosselot|2023-08-01T15:41:22-04:00Aug 1, 2023|Blog|

NFXF Board Member Jed Seifert recently represented the NFXF at the CEO Commission's Hill Day. Jed shares his reflections on this powerful experience.

We’re Urging Lawmakers to Support the Accelerating Kids’ Access to Care Act

By Hilary Rosselot|2023-07-26T13:27:40-04:00Jul 26, 2023|Advocacy, Blog|

The NFXF is one of 215 organizations urging lawmakers to support the Accelerating Kids’ Access to Care Act. Every child deserves the best care—regardless of who they are, where they live, or their family’s income.