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Member Stories

Louise Estabrook

Louise Estabrook

“The National Ataxia Foundation serves as a constant reminder for so many that we are not alone on this journey. The network and support provided by the NAF have enabled my family and me to find strength through this battle knowing that any success we achieve is not solely for our benefit but for the benefit of us all. After being diagnosed with SCA Type 3, I changed my diet to try to improve my symptoms. Changing my lifestyle to accommodate a new diet was a difficult challenge. …” Read More…


Shannon Dunphy Lazo

Shannon Dunphy Lazo

My journey began many moons ago. Happily, my ataxia has progressed slowly, over 20 years. For a while, I could still walk unaided. Then I eventually … But I digress. Most of you know the common symptoms of ataxia, so I won’t bore you with too many details. I have been grappling with who I Read More…


Michelle DeCiantis

Michelle DeCiantis

“I also was unaware that there were any kind of support groups or that there was a National Ataxia Foundation! Since finding those things out I have made many friends who are really like family whom I have built close relationships with over the years and stay close with and attending the annual convention with the newfound family members of mine, are what help me get through each day, to pick up my Facebook or the phone to talk to one of my sisters or brothers that I have adopted through this organization and who I share these diagnosis with has been part of my life line. Because no matter how much you educate someone or tell them about what you’re going through No one really understands except someone who is experiencing that themselves or at least experiencing something close to what you have and it is because the NAF, allowing me to meet these wonderful people and to attend the conference every year.” Read More…


Marc Alessi

“I think the first time I realized something was different about my dad was when he was forced to quit his job. I was 6 years old. Over the next few years, it became clear that some sort of illness was impacting my father’s life, later I found it to be called spinocerebellar ataxia. He started using a walker and eventually my brothers and I had to push him around in a wheelchair. Despite the disease that was changing my father’s life, he continued to be an inspiration and role model to me. My dad passed away when I was 15 years old. He didn’t give up without a fight and never lost sight of what made life great, despite the many reasons why it wasn’t. Two years after my father’s death, I was tasked with volunteering in a local fundraiser as part of the requirements for my health class. … Read More…


Ian Bouras

Ian Bouras

“My name is Ian C. Bouras. I love to play the guitar and produce music. I first noticed symptoms when I was struggling to play something on the guitar. I went to go see a doctor about my coordination and was diagnosed with Ataxia…… Read More…


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