NAF has launched a petition on Change.org calling on the FDA to prioritize treatment options for rare diseases with urgent unmet needs, including Spinocerebellar Ataxia (SCA).
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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…
My Ataxia Story My name is Robert (Bob) Budack and this all began with me when I was about 15 years old (in about 1967). I started having double vision occasionally. Since it was very sporadic at that time, I tried to ignore it as best I could. (Little did Read More…
This a poem I wrote for Brian Oliveira my husband who passed away from complications associated with Spinocerabellar Ataxia Type 3 (SCA3). Dedicated to Brian OliveiraWritten by Sari Oliveira Imagine for a second what it would be like:Just to live? Imagine having your entire life where living was exhausting?But you Read More…
Episodic Ataxia: The Invisible Impairment Often misdiagnosed, misunderstood, and unseen. A sufferer writes of a silver lining in his tale of swoon and gloom. by Timothy Wahl My childhood was the picture of any normal kid. I hopped, skipped, and jumped just like the rest. Then, at age 11, my Read More…
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…
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