John
About Me
John is a loving dad to one daughter and two grandchildren. He is a retired elementary teacher, who also worked as a case manager as well as a DJ in local radio. He loves watching sports, especially his favorite teams: the Buffalo Sabres, the Athletics, and, his all-time favorite, the Buffalo Bills. He enjoys spending time with my daughter and her family, listening to 80’s music, reading biographies, and watching civil war and crime documentaries. John also likes playing trivia and listening to podcasts on politics, history, and sports.
Diagnostic Journey
John has five siblings. He and his baby sister were both diagnosed with ARSACS in 2025. They were diagnosed by two different neurologists after both having been previously incorrectly diagnosed with CMT. John was clumsy as a child, and in the mid-90s, he noticed he was tripping more while playing sports. He also encountered significant balance issues. Over the years, he transitioned from a walker to a wheelchair. He attends PT regularly to address many of his symptoms.
Message to the Community
John has always been a positive person even and his motto is “Somebody has it worse than I do.” John admits that there are days when he is saddened by his diagnosis, but he shares his concerns with his sister and they both encourage one another to carry on. He hopes that someday there will be a cure, and he strives every day to enjoy the positives in life.
Message to Those Unfamiliar with ARSACS
John tells everyone who asks about his condition that he has a rare genetic disorder that affects his muscles and balance. His young grandson asks him about his condition regularly, and John does his best to explain the multiple symptoms.
Hopes for the Future of ARSACS
John hopes to have a cure or a treatment that will help him regain his mobility. He looks forward to new research and innovation that will improve his quality of life and permit him to continue to live independently.