Member Stories

On my 50th birthday my son and I rode bikes across the state of Kentucky. I did this 7 times before I turned 60. I have always been very active hiking, running, gym, cycling and basically anything to challenge me and contribute to health. I am now 68 and just Read More…

I’m a wheelchair user and have been for the last 10 years. I was diagnosed with Acute Myeloid Leukemia in 2010, my doctor identified me as having the flit 3 gene which makes leukemia tough to beat without a bone marrow transplant. In the beginning of 2012 I had my Read More…

My start with this condition began at the age of 16, when I started to lose my balance and got a drunken gait. Over time, I lost my reflexes, my muscle strength began to decrease, and my muscles atrophied. The family doctor sent me to an ENT consultation, then at Read More…

Hi! My name is Sandy Kaptain. About 20 years ago I noticed I was having falls. Just walking around the neighborhood but also when on vacation when there were wet leaves, on rocks, and then I started keeping track of them on a calendar for 3 years. I saw that Read More…

I have Spinocerebellar Ataxia type 2. Also known as SCA2. I was 47 years old when I was diagnosed. I already knew that I had it, because I have a family history of it. My mom had it, her mother had it, my mom’s sisters and one brother all had Read More…

Chapter 1: In the beginning I wasn’t always this way. Growing up the daughter of a military man I can honestly say red, white and blue run through my veins. I love America and my family for years has fought vehemently for this glorious country. Allow me to say here Read More…

My name is Anna Santoro and I am the stay-at-home mom of three boys and the primary caretaker to my mom, who has Ataxia type two. My objective is to share our Ataxia story, raise awareness, and provide other caregivers like myself with management tools to help care for their Read More…

Note: Korkut submitted his story in Turkish. Google Translate was used to translate his submission. The translation may not be accurate. We will include his submission in Turkish, followed by the English translation in italics. My Story Sca ile hayat. Merhaba herkese .oykum su Askere kadar hicbirsey yoktu (24 yas) Read More…

When I was a teenager I remember my father used to weave a little when he walked. We played a lot of golf, and he often toppled over when he tried to tee up his ball. “Damn middle ear,” he said, and we all nodded in agreement. Back then nobody Read More…

I’m actually reluctant to tell my story as it’s far from positive. Currently my tremors are more disabling than my balance issues, which are dreadful. I suppose I noticed things weren’t quite right about 10 years ago. I was diagnosed with Cerebellar Ataxia about 2 years ago, and to be honest Read More…