On International Ataxia Awareness Day, One Organization Is Shedding Light On The Disease
Published for NET News-Nebraska's NPR and PBS Station
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Slurred speech and stumbling while walking is just one of the major symptoms of Ataxia, a neurological illness. One organization in Nebraska wants to bring awareness to the rare disease.
About 150,000 Americans live with Ataxia. Dr. Linda Snider said the illness affects her ability to walk and talk. As a founder of Nebraska Ataxia, she wants more people to know what it’s like to live with the disease.
“When people say, 'I have breast cancer,' everybody knows what that means or what that is, right?" Snider said. "But when you say you have Ataxia, most people look at you like they don't know what you're talking about.”
Executive Director Judy Dierkhising said the disease doesn’t get the same attention as many other illnesses.
“The first step towards a cure is the awareness of the disease and how we educate the community, the general public in the medical community, in regards to Ataxia,” Dierkhising said.
The organization has given over $11,000 to Ataxia patients for treatments and weighted vests. Without a cure, Dierkhising and Snider said access to care is key to living with a better quality of life.
Nebraska Ataxia is collaborating with the Kendra Scott Gives Back program to host a 48 hour virtual shopping event from Sept. 25 to Sept. 26. Twenty percent of every purchase in the jewelry store with the special code GIVEBACK8615 will be given to Nebraska Ataxia. Visit https://nebraskaataxia.org/ to learn more.