Member Stories

NAF would like to invite members to share their story to increase Ataxia awareness and support for the NAF mission. NAF would like to extend a huge thank you to our members that have so generously shared their story. Share your member story by email to naf@ataxia.org.

 

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. Thinking back to my dad’s legacy, and with the help of a friend, I seized the opportunity to start a new fundraiser, Walk for Dave, in memory of my father. To date, we have raised over $18,000 for research to find a cure and have a 4th Walk planned for this August. I am passionate about supporting the National Ataxia Foundation because I know it’s a way to continue my dad’s legacy. With the recent diagnosis of the same disease of my younger brother, I am more determined than ever to stay positive and find a cure to spinocerebellar ataxia. I will never let the reasons to be negative in my life outweigh the reasons to stay positive. It’s what my dad taught me, and I will never let him down because he never let me down.” (Full Story)
 

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. Strangely, life before Ataxia felt very guided, as I always felt there were certain paths we are expected to take. With Ataxia, I feel less stressed about following an expected path, as I am now in "uncharted waters.” I'm inspired a lot by nature. I'm also very inspired by my emotions, many of which relate to Ataxia. There aren't many other people that can share those feelings, and I think that's something that makes anyone with Ataxia incredibly unique. I have always wanted to make an impact, and now I can do this by finding ways to continue to play guitar, to show that whatever hinders you can also make you stronger.” (Full Story)
 

Lisa Cole - (Video)
  “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 www.ataxia.org. 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.” (Full Story)

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.” (Full Story)
 

DeCrescenzo Family -
(Video)
  “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.” (Full Story)
 

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 am. I am still me, but I don’t always feel it. Where is the girl (now woman) who hiked the Grand Canyon and kayaked in Alaska? Where is the Shannon who went to graduate school, got a good job, and had a condo of her own? I miss that person. I know that things happen (I certainly didn’t plan on this), and I have begun to learn, too – learn how to come to terms with being on disability, learn how to rollate with grace, learn how ask for help, learn how to let go. It has taken much time and effort to accept my new life, and I am still working on being a new Shannon. I am getting there, I hope, rising from this sinkhole of denial. Even though I don’t have a Magic 8 Ball to tell me my future, I can tackle ataxia the best I can. I’m building a support system. I have moved close to family, to the Midwest (but still cheer on my beloved Washington Nationals). I’ve made lifelong friends from ataxia support groups in the DC area and in Chicagoland. I’m proud to say I’ve been to 7 National NAF Ataxia Conferences, and I hope to attend many more. I also have Facebook friends and belong to several ataxia groups. I enjoy being with others who understand and don’t judge.” Shannon is busy reviving the St Louis Area Ataxia Support group. Do you live near St Louis -southwest Illinois or eastern Missouri? Shannon welcomes referrals of ataxians and friends! Shannon can be reached at shan_d@hotmail.com. (Full Story)
 

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. While the support of my family made it easier, my real strength came from knowing that if I was successful I could hopefully help others improve their symptoms, too. Since then, I have shared my success with others who suffer from similar symptoms which has helped me realize the importance of having a support group. The NAF has provided a platform through which we teach and share our experiences, encouraging each other to live the best life possible. Through the NAF, we are one, and we fight, overcome, and survive as one.”
 

Ferris Family
  “When Liesel was a baby I noticed her not meeting her milestones. Liesel’s Pediatrician watched her closely. At her 6-month checkup we made the decision to start therapy, but it took 2 months to get approval from insurance. Liesel started physical and occupational therapy at 8 months old. During that time, everyone believed she was just severely delayed. Liesel’s Pediatrician knew it was more than just being delayed...” (Full Story)
 

Mary Fuchs
  “For me, it is now about the “Fight for a Cure” and “Ataxia Awareness.” I found the Arizona Ataxia Support Group when we first moved to Arizona. I needed them and they needed me. They were experiencing “burn-out” and I had lots of energy, time, and new ideas to give. I am now co-coordinator since August 2010. I found the NAF, great support help and friends forever. After these 16 years of living with ataxia, my priorities are diet, exercise, support, education, encouragement, safety and FAITH which is huge for me. We cannot “stick our head in the sand” and hope it goes away. We all have gifts and talents. My message is “USE THEM, it’s not about what you lost or can’t do, it’s about doing things differently.” (Full Story)
 

David Henry Jr.
  It is a “Funny thing”, now looking back at what caused me to seek a diagnosis’. Yeah, spending some quality time in jail caused me to get motivated to find some answers. Even though I passed the breathalyzer, but because I could not walk in a strait heal-to-toe line, my blood was drawn at the local Hospital. Cleared of any and all alcohol in my system it was assumed that I was on “some” drug, just cause if you my pupils were a little ‘JUMPY’. With-in a short year I was clinically diagnosed with an unknown form of SCA. I needed to do some good research, NAF's home page (www.ataxia.org) was not the only source I found, but it proved to be the best and most concise, yet complete and 100% understandable to me. In my seeking a diagnose I missed the 1999 National Ataxia conference, but started making plans to be at the 2000 AAC (Annual Ataxia Conference) in Biloxi, MS. It was well worth the wait. Not counting that first year, I’ve only missed one Ataxia Conference since I was diagnosed. With the abundance of information gained from the NAF’s home page, I gleaned information from the Ataxia FAQ, the research information, events, resource links, other support groups, blogs, bulletin boards, yes even “chat-room discussions”, I almost feel adequate to facilitate the North Texas area Ataxia support group in this area – some times. But knowing that the National Ataxia Foundation with all their great staff is just an e-mail or phone call away make it possible. (Full Story)
 

Lisa and Jane Jaffe
  My name is Jane Jaffe. My daughter, Lisa, was diagnosed with Ataxia in July 2002. We were shocked when the neurologist told us our gorgeous, smart, funny, terrific daughter had a part of her brain shrinking. At the time, Lisa was a teacher. She holds a Master's Degree in Education. I remember saying "there is no such thing as a shrinking brain". I got on the computer and learned everything I could about the brain. We took Lisa to all the top neurologists in the United States. I was sure there was a cure... Today, 15 years later, our daughter is not a teacher and she can't plan a lesson. She does not drive her car, but she loves to go out. Our lives are new, but normal. We all live with Ataxia, not just Lisa. Life is so precious and we appreciate every day. There is life after Ataxia. Your support means the world to those affected by Ataxia. Your donation will help us find a cure. (Full Story)
 

Leonard Family (Video)
  “My name is Stephanie Leonard, and I have two sons, Ames and Asher. When they were babies, we started noticing they were delayed with milestones and didn't take their first steps until after their second birthday. After countless hours of research, physical therapy, doctor appointments, MRIs, and genetic testing we finally received our answer as to why Ames and Asher were struggling. On February 11, 2016 our lives changed forever. Ames and Asher were diagnosed with Spinocerebellar Ataxia (SCA) at the age three. It was heartbreaking. SCA is a rare, neurodegenerative disease causing poor coordination and balance (ataxia), difficulties with speech, swallowing and cognitive impairment as well as tremors and sometimes seizures. Sadly there is no cure, and it is often fatal. Due to the Ataxia, Ames and Asher struggle with weakening of their legs and are currently wearing orthotics to help with balance, using walkers for stability for short distances and a wheelchair for longer. The twins also have difficulties with coordination of their hands, making it hard to achieve daily tasks such as eating with utensils, buttoning their clothes, and writing. Each day presents new challenges to overcome, but we have found much comfort through the special friendships we’ve established with other members of the National Ataxia Foundation, and we proudly call them our forever family.” (Full Story)
 

Ed Schwartz -
(Video)
  “Ataxia is the biggest challenge I have ever had to face in my life. About twenty three years ago I began to fall down in the dark. Then after experiencing symptoms of 6 other disorders over the next 20 years, and a seizure-like reaction to the composite collection of drugs I was taking, I wrecked my truck! I quit driving and shortly after that attended the “Brain Conference” in Philadelphia. While there, I talked with volunteers at the NAF kiosk. It felt like I was talking to myself in the mirror!! They all had walking, coordination, and speech problems like me. We agreed I probably had Ataxia. Upon return home I joined NAF, got another MRI along with a diagnosis of: atrophy of the cerebellum. The visit to the NAF kiosk was the start of the series of diagnoses, decisions, and actions which led to an understanding of my problem. I’m not symptom free and don’t expect to be unless NAF finds a cure---but I can enjoy my life again.” (Full Story)
 

Linda Snider, MD
  “My name is Linda Snider, MD, and I am 45 years old. I started experiencing symptoms in my late 30s--walking off balance, slurring my words, and tripping a lot. I was diagnosed with SCA type 1. I became a doctor because my father had Ataxia and I became interested in medicine at a young age. We visited many doctors to try and help my dad, and I loved the idea of being able to help others too. It drives me to be a better person. Everything was easier before Ataxia. I could do whatever I wanted without having to plan ahead. Now, I have to focus on every move I make. I need to rest more often and everyday tasks take much more effort. However, I have learned how to ask for help. Surrounding myself with amazing people is what keeps me motivated and encouraged, strong and focused. I love to see new things and visit new places and I love to eat. My motto - I’ll try anything twice”(Full Story)
 

Jonathan Zilles
  “I’m Jonathan Zilles. I was diagnosed with Friedreich’s Ataxia when I was 11 years old. Life as a kid with Friedreich’s was pretty normal, but I fell down a lot. My symptoms started early and included hand-eye coordination issues. Despite FA, I was fortunate enough to graduate both high school and college, and even live on my own for a few years. Friedreich’s has since taken away my independence. I need 24-hour support and care, so I live with my parents. I use a service dog to help me—although I recently lost Phelps to a heart attack. Phelps was a great friend and helped make life more enjoyable. I like listening to music, watching college football (Go Auburn!) and the San Antonio Spurs. I’m 38 now and have 2 older sisters that are both carriers of the disease. If I were to give advice to someone who is newly diagnosed with Ataxia, it would be to find a good neurologist, learn as much as you can, and seek out other families dealing with Ataxia. My story is just one of 150,000. Please donate today and help us find a cure!”(Full Story)