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National Ataxia Foundation

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Shawn Andrus

My name is Shawn Andrus, many call me either, husband, father, son, uncle, and one calls me Godfather. I was diagnosed officially with Ataxia in January of 2020 at 48 years of age. My journey began with a fall where I was told to monitor for signs of concussion. I had no idea this was a case of something more serious, neither did the doctors. For months, myself along with my family continued to watch for signs after my fall, which led to another fall. The doctors then ran many tests and came to the conclusion and diagnosis that I have Ataxia.

After my diagnosis I was almost able to make it a year before I was forced to stop working due to my disease. I quickly relied on my walker as my best friend as I became weak on my feet and did not want to risk a fall. I was told if I fall again, the outcome would not be good. I now switch off between my walker and a wheelchair or my trusty scooter to get around. When I am out and about my scooter is my best mobility. It saves my energy and keeps me safe! 

I have an amazing team, I am told, at the U of M Ataxia Center and currently running many tests to try and pinpoint ways to better my quality of life and to learn exactly what kind of Ataxia I have. This is exceedingly difficult to pinpoint as there is many types of this rare disease. 

Unfortunately, my Ataxia is quickly progressing and taking over. However, I am not going to let Ataxia control me, I control it. This must be everyone’s motto who has this disease. My speech has deteriorated fast, but I am doing my best to keep on allowing myself to speak as long as I can, and I will continue to move and walk as much as I am allowed till the disease wants to bound me to a wheelchair only. 

We may not ever know what type of Ataxia I have. I have faith and trust in my doctors that someday my story can help others who are diagnosed with this rare disease.

His Fight is My Fight - by Samantha Andrus

My name is Samantha Andrus, and I am Shawn’s Goddaughter and niece. This is my fight for him. In 2021 my grandpa passed away and something hit me deep inside that you can do more, you need to do more, how can I do more? Near the end of 2020 I had a Jeep I needed to get rid of and I wanted to donate it. However, I did not want to donate to any old charity, and it hit me I want to donate it to Ataxia, this is something little that I can do to help make a difference. That was just the beginning of my fight journey, this is where I found NAF (National Ataxia Foundation).

After I donated my Jeep, I reached out to Jon at NAF to find out how I could get more involved. My Grandpa passed in May before Memorial weekend of 2021 and I felt this overwhelming joy to have influence. I gathered my thoughts and created a fundraiser. I had no idea what I was doing or where to begin, but I dove headfirst into it with all my heart.

We had an amazing first year turn out raising almost $4,000 for NAF. I have now appointed myself as a volunteer fundraiser for NAF with a 2022 goal amount of $5,000 to help raise awareness for Ataxia. This will be our 2nd year hosting a fundraiser and I will continue to host fundraisers well after my uncle is no longer with us. As I said before, it’s not just his fight. It’s my fight, my family’s fight, and I will not stop until I am heard. This disease is so rare that if you Google “Ataxia” there is hardly any information. 

 

It’s my passion and goal that when I say Ataxia, you have a least heard of it or you know what it is. I want people to no longer say “what is that?” or “what is Ataxia?” Their response needs to be distinct. My passion and goal to achieve this is very strong so I will not give up. Unfortunately there is no cure. Hopefully someday with the continued research, and raising money, there can be a cure.I need to do my part by continuing to support those with Ataxia and support my Godfather because no one should have to fight alone. We are in this together as a family. We must continue to talk about it so people hear it, get familiar with it, and make this rare disease known.

 

What is Ataxia you say? Ataxia is a degenerative disease of the nervous system, many symptoms of Ataxia mimic those of being drunk, such as slurred speech, stumbling, falling, and incoordination. These symptoms are caused by damage to the cerebellum, the part of the brain that is responsible for coordinating movement. There currently is no cure, so we are making sure my uncle does not fight alone. We are spreading the word every chance we can and hosting fundraisers and events to raise awareness along with money so that someday there can be a cure.

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