Member Stories

Hi I’m Brian and this is my story… I was diagnosed in 2010 with Cerebellar Ataxia type 3 (sca3) it’s genetic and another family member has the same disease. My first visit was to my GP then a referral to the geneticist to get my final diagnosis. I was a Read More…

Life as I knew it, irrevocably changed fifteen years ago. It wasn’t an immediate event, but a slow, unraveling of my ability to move about normally. The rare, inherited condition that my Norwegian grandmother called the “falling disease” chose me, and I lost the genetic lottery. Most of my adult Read More…

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 Read More…

The Michael and Patricia Clementz-Peterson Family Fund has supported NAF in many ways throughout the years. Since 2017, they generously pledge to match donations made to NAF’s Summer Match Challenge. The campaign has helped raise more than $1 million to-date. We asked them to tell their story. Pat’s Story Our Read More…

Collective Strength During my late thirties my loss of balance was apparent. That was over 35 years ago. By my early forties, I was diagnosed with Cerebellar Ataxia. Prior to that day, Ataxia, cerebellum, and degeneration were words I never heard of. No family, friends, or public figures had this Read More…

Hello.  My name is Christie Alexander.  I have worked as an Early-Childhood educator for 21 years.  A few years ago, I was diagnosed with a rare disease called Olivopontocerebellar Atrophy (OPCA).  But wait, you may be thinking, “I thought this was a story about Ataxia?”  It is.  Being given an Read More…

Hi! My name is Ewa 🙂 I live in a beautiful and green country – Poland. I am a recently diagnosed person whose story is probably quite unique, because almost anyone is diagnosed without having symptoms. I didn’t have any signs of Ataxia, but quite a few people have Ataxia Read More…

I am 41 years old and currently live in Ashland, VA. I have SCA2. My Mom, Aunt, Grandfather and cousin all have or have had it as well. I started to feel off earlier this year and knew what to get tested for because of my Mom. I can still trail Read More…

Most of my career I lived in Texas and worked as a secretary.  After I retired, I moved to Maryland to be closer to relatives.  I’m so grateful that I didn’t have ataxia when I was working.  Here’s my story.  In 2009, I began having trouble swallowing.  Sometimes food would slide Read More…

I have Ataxia and encephalitis; Spinocerebellar Atrophy (SCA) was “identified” from a MRI in 1990.   The SCA is an evolving situation, from stumbling, to walker, to wheelchair.  I’ve been housebound for many years (the Covid virus doesn’t seem a big deal.).  Some think Agent Orange is the cause and other Read More…