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Our Champions


A life just starting…

When the neurologists told me I had ALS, I didn’t even know what that was.   I was 23 years old, recently graduated from College and spent every day in remote areas of the desert, helping with environmental conservation.  I honestly thought I was just weak and tired from my grueling schedule.  In fact my friends bought me hand strengtheners as a joke for my birthday.  When I received my diagnosis and the prognosis, I immediately turned to my mother and said I want to take that trip to Europe we have been talking about.  Within 1 month I had my first passport and was on a plane and I haven’t stopped yet.  

I want to leave this world knowing that I had done all I could to see it and appreciate it’s beauty.  People comment a lot on my positive outlook.  I definitely have my bad days, but I always think, if I have limited time left, I don’t want to spend that time feeling sorry for myself.  Incurable means no cure, and if there is nothing I can do about my fate, then I may as well enjoy the days I have.  I want to have an incredibly full life without regrets and I encourage everyone to do the same.  You never know what kind of turn your life might take.

Having non-genetic ALS at 23 is pretty rare so I also decided to share my unfiltered story on social media.  As my story has been viewed, I have been overwhelmed by the positive messages of hope and care from people all over the world.  I want to take this moment to thank them all for helping me spread the word that, any person, at any stage in their life, can get ALS and awareness is the first step in finding/funding a cure.

Erin 

   

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