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Member Stories

Nancy Kochevar

I am 69. I became aware that something was wrong in 2016 when I lived in Southern California.   I started with my physician, went to an ENT had CT scans, and eventually went to UCLA. I had this strange feeling in my sinuses.    From there, I noticed that Read More…

Martha Harlem

My journey with Ataxia has been a life full of ups and downs. Ataxia has defined most of my life since it was first diagnosed in 1988. I was 38 years old and I am now 69. My mobility, balance, speech , swallowing and motor skills have been adversely affected Read More…

Katie Norton-Bower

Recently, a bright young lady reached out to NAF’s Research Services Director, Sue Hagen, to ask for help with her school project. She wanted to bring awareness to Ataxia and teach her classmates about the disease. Sue was happy to help. We were so impressed with her project that we asked Read More…

Jean Gossip

You can call me Jean Gossip. I am 76 and was born in Aberdeen, Scotland. We moved, as a family (3 children), to Australia in 1991 when my husband took up the Chair of French at the University of New England, here in Armidale, NSW. I have an honours degree Read More…

Dirk Desserault

The Glass Half Full I have always tried to live my life seeing the glass as half full. Even being diagnosed with Friedreich’s Ataxia (FA) at age 14. I simply viewed it as a hurdle, not a death sentence. Growing up in a fairly rural area meant that any exposure Read More…

Amanda Simmons

My name is Amanda Simmons and I was diagnosed with SCA6 in 2018 just after my 45th birthday. I inherited from my father. I am the youngest of five children and as far as we know I am the only one with SCA6, which I very much hope is true Read More…

DeCrescenzo Family

DeCrescenzo Family

Ten years ago this month, my husband Joe was diagnosed with hereditary Spinocerebellar Ataxia, SCA2. That marked the day our lives changed and would never again be the same. Since then, our youngest daughter tested positive for SCA2 as well. We had time to process the diagnosis and vowed not Read More…

Ian Bouras

Ian Bouras

My name is Ian C. Bouras. I love to play the guitar and produce music. I first noticed symptoms when I was struggling to play something on the guitar. I went to go see a doctor about my coordination and was diagnosed with Ataxia. Strangely, life before Ataxia felt very Read More…

Marc Alessi

I think the first time I realized something was different about my dad was when he was forced to quit his job. I was 6 years old. Over the next few years, it became clear that some sort of illness was impacting my father’s life, later I found it to Read More…

Michelle DeCiantis

Michelle DeCiantis

Ataxia came to me as a? More than 15 years ago and each year that passes more questions are added to my story. I have been diagnosed with SCA unknown type with an overlapping of upper motor neuron disease unknown I’ve seen doctors from UCLA to University of Michigan. I Read More…

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