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Sharon Hill Resident Establishes Foundation to Help Niece Diagnosed with Rare Genetic Disorder

Neumann senior Sarah Watson poses with her niece Kendall at a bake sale fundraiser to announce the launch of her website www.kendallscure.org. Kendall was diagnosed with Ataxia with Oculomoter Apraxia Type-1. The website provides information for families affected by the disease and raises funds for research.

Neumann University student Sarah Watson, a resident of Sharon Hill, has started a foundation in honor of her niece, Kendall, who was recently diagnosed with Ataxia with Oculomotor Apraxia Type I (AOA-1). Watson has researched the disease and started her own website to provide information for families affected by AOA-1 and to raise funds for research of the rare genetic disorder.

 

Watson recently held a bake sale at Neumann to raise funds and to launch her website www.kendallscure.org. She collaborated with Frank Mazza, a senior communications major, who designed and launched the website in April.

 

Cerebellar ataxia with oculomotor motor apraxia, or AOA-1 is an inherited disease of the cerebellum, a part of the brain. It usually starts with irregular walking that can appear as a limp. This symptom usually starts around age 7 or 8. Individuals with the disease have trouble moving their eyes from side to side, which makes it difficult to follow objects. About 7-10 years after the symptoms start, patients will require a wheel chair for mobility.  Over time, patients develop speech impairments that can be mild or severe.

 

For more information on the disorder, or to donate, visit www.kendallscure.org.
All proceeds go to The Fredrich’s Ataxia Research Alliance (FARA).

 

5/17/10