Find Events | Sign Up for Newsletter

Member Stories

DeCrescenzo Family

DeCrescenzo Family

“We had time to process the diagnosis and vowed not to let it change who we are or alter our daily lives. We found a neurologist who specializes in movement disorders and Ataxia. We also joined two support groups, one at Johns Hopkins Medical Center, and the other with the Chesapeake Chapter NAF. We met so many wonderful, inspiring people who were struggling with Ataxia but always stayed positive, which we admired. Our next step was to join the National Ataxia Foundation (NAF). We are so thankful we took that step. Our first encounter with NAF was attending the Annual Ataxia Conference (AAC) five years ago in San Antonio, TX. I must also admit that the first conference had a huge impact on our lives. It made us realize we are not alone and it gave us strength to move forward…. Since then, we have become advocates, started our own support group in Delaware, and organized many fundraisers for NAF.” 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…

Lisa Cole

Lisa Cole and daughter

“I want to help the NAF and spread awareness about Ataxia. One way I could help support NAF and also bring about awareness was by having fundraisers. I have approximately 2 fundraisers per year. Introducing the NAF to my friends and acquaintances or by telling them to go directly to the website In early 2013, I was on a treadmill for a stress test and almost fell. I blamed it on my knees. I went to an orthopedist, then to a neurologist. It was that neurologist that listened to me and sent me to Gainesville for a second opinion. I’m glad to get the correct diagnosis even though it is not a good one. I am starting a support group here on the east coast of Florida. I have ataxia, which won’t change, but I do want to help as many people that I can. The NAF is a great resource. I will definitely get as much information I can from the NAF. I want to help others plus it’s helping me.” Read More…


Connect With Us

Add me to the NAF email list so that I can stay informed about the latest Ataxia developments.

Become a Member

Help support important programs for Ataxia families by becoming a NAF member today. Members receive monthly newsletters, our quarterly Ataxia publication, and discounted rates to the annual conference.

Contribute Today

Help find a cure for Ataxia when you donate to support the NAF mission. With your help, NAF will continue to fund promising Ataxia research and offer support to people with Ataxia.

Donate Now