Bill Nye is back in his lab with NAF and Biogen—breaking down the science of Friedreich Ataxia in a new video series. WATCH NOW
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…
I was born in a family with SCA2 back in India. My father had the symptoms of Ataxia as well as all his five siblings. At that time, it was not genetically tested, but all of his siblings were symptomatic. All of them were wheelchair-bound at the end. However my Read More…
I got diagnosed at 40 after always walking awkward and 2 years of being unsteady. Now I’m going to start physical therapy and apply for SSDI. It’s sad for me, I have 2 little ones but I know God will see me through. When Were You Diagnosed? Which Type (If Read More…
When Charlie Ruehl was in high school, his mom Susan recalls he would always miss the same step at the bottom of their staircase. She chalked it up to him being off-balance and in a hurry—after all, he was an athletic, teenage boy and he was always running off to Read More…
Hi, my name is Daniel Queirolo, I’m Brazilian, 39 years old, married to an incredible woman and with an equally incredible 3-year-old daughter. About 2 years ago, I suffered from burnout caused by a huge workload, combined with a toxic boss and a terrible work environment. I felt really bad. Read More…
My unwanted guest arrived when I was conceived. He rode in on my DNA and set up residence in the part of my brain called the cerebellum. This is located in the lower back of the brain and controls the major muscles and coordination. He lived very quietly, in fact Read More…
My name is Tom Lawson and I am 46 years old, married with three children and a dog. I was diagnosed with Cerebellar Ataxia six years ago. Being diagnosed with a chronic auto immune disease was unsettling, no doubt. It’s sobering. It’s terrifying. It is a reminder of my fragility Read More…
