Steve and Shirley Kaufman are determined to Stand Up to Fragile X

By |2018-12-12T11:05:23-05:00Dec 12, 2018|FXTAS, Hope & Inspiration|

Steve was diagnosed with FXTAS 8 years ago, and since then, he and his family have provided significant financial support to FXTAS programming at the NFXF. They are supporting our goal to build a worldwide consortium of FXTAS clinics to help improve the rate of diagnosis and the delivery of current treatments. This will also set us up to be ready to conduct future clinical trials for new treatments.

FXTAS Clinic Directory Now Available

By |2018-10-22T10:36:18-04:00Oct 16, 2018|FXTAS|

Looking for a FXTAS clinic? A directory of clinics around the world is now available here.  All of the clinics are part of the International FXTAS Consortium (IFC). The IFC was co-founded in 2017 by [...]

Visiting a FXTAS Researcher

By |2024-01-21T18:06:48-05:00Aug 21, 2018|FXTAS, Research|

On July 28, 1028, the University of Central Florida College of Medicine hosted an open house for families affected by Fragile X-associated tremor and ataxia syndrome (FXTAS) to highlight their research. Missy Zolecki, NFXF [...]

I Have FXTAS: Now What?

By |2024-01-21T18:04:11-05:00Jan 18, 2017|FXTAS|

FXTAS is a chronic disease. If FXTAS patients maintain good general health and do not have other medical problems, many can have fulfilling lives for years after diagnosis. Regular visits to a neurologist, high levels of physical activity, and the use of other therapies and resources are key to sustaining a good quality of life.

FXTAS Caregivers: There is Help!

By |2024-01-21T17:19:40-05:00May 11, 2016|FXTAS|

Family caregivers play a critical role in managing the needs of individuals with FXTAS throughout the course of the illness. People with FXTAS rely on caregivers for a wide range of support—preparation of meals, household chores, transportation, medications, bathing, dressing, feeding, physical, emotional and social care, and managing family money.

When “Marriage” Is Spelled F-X-T-A-S

By |2013-11-20T10:32:30-05:00Nov 20, 2013|FXTAS, Hope & Inspiration|

My whole marriage to my husband Vince can be described by one acronym: FXTAS. Our wedding was in April 1999. It was a second marriage for us both, and we weren’t youngsters (I was 48 and Vince was 64), but I thought we were both healthy. We had no inkling that Vince’s mind was already deteriorating from FXTAS.

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