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)
 

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)
 

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)
 

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)