Member Stories

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…

I had never heard of the word Ataxia and neither had my GP. My initial diagnosis didn’t take very long but I was not told I had Ataxia; the neurologist told me I had cerebellar degeneration. When I googled it, I discovered the word Ataxia. I emailed the Neurologist to Read More…

My name is Linda, and I have been dealing with SCA3 for 17 years. I worked in the medical field for over 20 years before retiring in 2015. The progressive nature of Ataxia made it too difficult to continue working. It certainly presents challenges daily, but I try to maintain a positive attitude and count my many blessings.  First and Read More…

I was in high school when I saw Pride of the Yankees the story of Lou Gehrig. In this 1942 movie Gary Cooper played Lou Gehrig who played in 2130 consecutive games. Gherig, who had ALS, died a year before the films release. In the movie as Lou Gehrig (Gary Cooper) Read More…

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…

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…

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…

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…

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…

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…