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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.

Visiting a FXTAS Researcher

By |2018-09-05T11:57:35-04:00Aug 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 Central »

I have FXTAS: Now what?

By |2017-09-21T13:58:33-04:00Jan 18, 2017|FXTAS|

Fragile X-associated tremor/ataxia syndrome (FXTAS) is a disorder that affects Fragile X premutation carriers, typically over the age of 55. Individuals with FXTAS have tremor of their hands when they are using their hands to do activities. They also have difficulty with their walking, appearing as if they were drunk even though they are sober. As the disease progresses over time, people with FXTAS can develop problems with memory and loss of sensation in the feet. Symptoms are highly variable, with some FXTAS patients having more severe tremor and others having more balance issues. Women tend to be more mildly affected, if they are affected at all, due to the typical presence of a normal Fragile X gene on their second chromosome.

FXTAS Caregivers: There is Help!

By |2016-05-11T11:30:26-04:00May 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.