Go the Extra Mile 2 Cure Ataxia!

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Alicia Knopp

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$5,000 Goal

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Hello all!
Thank you for showing interest in Go the Extra Mile 2019!

Hike day is May 26th 2019 at 10:00 A.M.
Location: Brookhaven State Park
Please RSVP by May 1, 2019 to [email protected]

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

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 celebrate the 62 years that The National Ataxia Foundation has been helping families we will be walking a collective amount of 62 miles. The more people that join, the less we will have to walk! (The minimum hiking distance will be 3 miles.) 
My goal is to raise $5,000 or more, and invite you, your friends and family to participate by joining on May 26th 2019 or making a contribution or even as little as passing the word along. All donations will be made to The National Ataxia Foundation in support of their mission and are tax-deductible.
If you have any questions for me please email at [email protected]

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

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