Blog Archives | NFXF (original) (raw)

Preparing for the Return to Routine After a Long Break: Tips for Educators, Employers, and Caregivers

By Missy Zolecki|2024-12-27T16:50:59-05:00Dec 27, 2024|Behavior, Blog, Treatment and Intervention|

The return after a long break can be a difficult transition for anyone, especially an individual living with FXS. With thoughtful planning and a compassionate approach, the entire support team can help ease the process.

Gene therapy simplified: what is it and how does it work?

By Anna De Sonia|2024-12-11T13:00:50-05:00Dec 11, 2024|Blog|

Gene therapies are being developed at a rapid rate. Although there are currently no FDA-approved or interventional gene therapies for FXS, the future has never looked brighter for treating the root cause of FXS!

Hope for the Future – Adult Resources

By Kristin Bogart|2024-12-03T16:14:49-05:00Dec 3, 2024|Blog|

Learn how we are equipping families with resources needed to plan for the future with confidence, while we continue to work towards treatments for Fragile X.

Hope for the Future – Expanding Clinical Care

By Kristin Bogart|2024-12-04T11:53:43-05:00Dec 1, 2024|Blog|

Learn how we are expanding our network of Fragile X clinics to better support individuals living with the Fragile X premutation.

Messages of Gratitude — Video

By Kristin Bogart|2024-11-26T13:06:11-05:00Nov 26, 2024|Blog|

When we take a moment to reflect on what means the most to us in this season of gratitude and joy, the Fragile X community tops the list.

Hope for the Future – NFXF Belonging Grant

By Kristin Bogart|2024-11-25T11:01:02-05:00Nov 22, 2024|Blog|

Our NFXF Belonging Grant is already making an impact. Learn how we're expanding this program to reach even more families impacted by Fragile X!

Hope for the Future – Find Our People — Video Slideshow

By Kristin Bogart|2024-11-25T11:42:58-05:00Nov 20, 2024|Blog|

We're on a mission to find and support EVERY family living with Fragile X

The Michigan Medical Fragile X Clinic

By Kristin Bogart|2024-11-06T16:14:40-05:00Nov 4, 2024|Blog, FXCRC and Clinics|

Highlighting the Fragile X Clinic at the Michigan Medicine Fragile X clinic , a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)

You Spoke, We Listened: The Completely At Home RECONNECT Clinical Trial –Participate in Research Without the Stress of Traveling

By Anna De Sonia|2024-10-31T12:03:46-04:00Oct 31, 2024|Blog|

You Spoke, We Listened: The Completely At Home RECONNECT Clinical Trial –Participate in Research Without the Stress of Traveling

Now Live: Two FXTAS webinars with the National Ataxia Foundation

By Hilary Rosselot|2024-10-22T13:59:48-04:00Oct 22, 2024|Blog|

By Hilary Rosselot Partnering with the National Ataxia Foundation to Raise Awareness for FXTAS In September, we partnered with the National Ataxia Foundation (NAF) on a webinar series about FXTAS. Our first webinar was [...]

The Dos & Don’ts of Participating in a Clinical Trial

By Anna De Sonia|2024-10-28T09:43:13-04:00Oct 15, 2024|Blog|

We live in a day and age of social sharing, and that is not going anywhere. However, when we participate in a clinical trial, we have to understand that we cannot share everything in order to protect the integrity of the trial.

Happy National Disability Employment Awareness Month!

By Hilary Rosselot|2024-10-10T13:32:33-04:00Oct 9, 2024|Blog|

October is a time that draws the attention of the nation on critical issues related to disability employment, bringing awareness to a subject that we know has importance all year round. We know many individuals living with Fragile X want to work and though some do, not everyone who wants a job has found one that best fits their strengths and skillsets. We are determined to help you educate yourself on the supports that exist and how to best advocate for you or your loved ones needs in the workplace.

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.

The 2024 RJH Summer Scholar Presentations Are Now Live!

By Anna De Sonia|2024-09-25T16:48:39-04:00Sep 25, 2024|Blog, Research|

We asked our 2024 NFXF-funded Randi J Hagerman Summer Scholars to summarize their summer project in a 15-minute video presentation, and here they are!