I was excited to participate in the 2022 Hill Day advocacy because it is to raise awareness of Cerebellar Ataxia by congressional leaders that hopefully endorse funding in the medical research of Cerebellar Ataxia. I didn’t know what to expect when Hill Day 2022 arrived. There were 4 of us to talk Read More…
Discovering that you and your family have or are at risk for a rare genetic disease, such as Ataxia, in my case SCA7, can be pretty devastating. Knowing there is no cure, no approved treatments to slow the disease course, and that it is relentlessly progressive can feel overwhelming and Read More…
My name is Jo Ann Kovar. I’m a 60-year-old resident of Ames, Iowa. I moved here 22 years ago from South Louisiana. When I first moved here, I led an average life and was able to jog, do dance aerobics and climb on chairs to reach high things in my Read More…
I had a normal childhood growing up other than I was uncoordinated when it came to playing sports. I was bright, did well in school, and went on to receive a master’s degree. I became a high school special education teacher and worked as a coordinator for physically disabled students. Read More…
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…
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