Go the Extra Mile 2 Cure Ataxia!

Alicia Knopp

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My name is Alicia Knopp and my family carries the genetic disorder Spinocerebellar Ataxia (SCA).

To celebrate the 62 years that The National Ataxia Foundation has been helping families we walked a collective amount of 62 miles on May 26th 2019. By doing so we collected $3,193.24! 
Thank you to all of our friends, family, and supporters that came out on hike day and to everyone that could contribute a donation to help our efforts in spreading awareness and fundraising to help find treatments, and hopefully one day a cure to help all those affected by Ataxia.
If you would still like to donate to this fund feel free! All donations will be made to The National Ataxia Foundation in support of their mission and are tax-deductible.
To learn a little more about my story and Ataxia, continue reading below. 

My mother, being the oldest of 4, was the first one in our family to find out about this disease. Growing up we started to notice unusual things, she was very clumsy, she would choke while drinking, and she started waddling when she walked. One day our neighbor even approached my father and asked if our mother had been drinking, due to her slurred speech. All of these things are symptoms for the disease that took test after test after test that finally concluded in a blood test. After learning the diagnosis and that it was a genetic disease, we learned that she had received the gene from my grandfather, and that my uncle and one of my aunts also received this genetic mutation. 

There are many forms of Ataxia with different severities with onsets ranging throughout life. Some are genetic, like the one my family deals with, others can be acquired due to injury or disease. The distorter SCA that my family carries is a progressive disease that leads to degeneration of the cerebellum which controls coordination. The individual lives a normal life until the onset which occurs in their 30's, which is when symptoms such as problems with walking, talking, swallowing, fine motor skills and vision problems start to arise and worsen over time leading to complete disability. 

Because SCA is a genetic disease, everyone in my family whose parents were affected all have a 50% chance of inheriting it, including me.

Although this disease is not common, the story my family has is not unique.
150,000 people in the United States alone are affected by some form of Ataxia.

To learn more about The National Ataxia Foundation and different conditions please visit https://ataxia.org/

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