At twenty-three, Yesenia Ramos from Edmond, Oklahoma, reflects on her life with Friedreich’s Ataxia (FA), a condition she was diagnosed with at the tender age of six. Her Mexican heritage is a significant source of pride, and she lives with her supportive parents and an older brother who also has FA. Yesenia’s path to diagnosis...

At least, they shouldn’t be. But here we are… Lily Pierce It’s sad when people limit their lives rather than use a mobility aid.  Many feel embarrassed to rely on a walker or wheelchair due to societal stigma.  At 19, Lily’s Friedreich’s Ataxia progressed, leading to frequent falls.  After resisting, she finally bought a rollator...

Hope is being able to see that there is light despite all of the darkness. Desmond Tutu I have mentioned Neurofeedback therapy in past articles and now that I have completed a few sessions, I wanted to expand on my experience. As always, I am trying to learn what treatments and therapies are working for everyone. If...

Fatigue is the shadow of ataxia, but within that shadow, we can discover the strength to shine. Living with ataxia, a neurological disorder that impairs movement and coordination, comes with special difficulties that go beyond physical symptoms.  Constant fatigue is one of the most common and confusing symptoms that people with ataxia face.  It’s important to...

Hey everyone, today I want to share the inspiring story of the Ruehl family and their journey with Ataxia.  Their story is a powerful reminder of resilience, hope, and the importance of community support. The Diagnosis The Ruehl family’s journey began when they noticed something was different with their daughter, Avery. She struggled with balance...

Hi everyone, I recently read a touching story about Mark Desa, who lives outside Toronto, Canada.  Mark has ARCA1, or Autosomal Recessive Cerebellar Ataxia type 1, and he shared his journey with this rare condition. Mark’s childhood was filled with happiness and normalcy.  He was active in karate and weight training as he grew older....

Does living with multiple sclerosis sometimes make you feel sad, tired, and unmotivated? If so, what you’re feeling may be a normal psychological reaction to coping with a life-changing disease. Or it may be the result of actual physical changes because of MS. While medication can help restore balance to brain chemistry affected by MS,...

The journey of Steven Denning, a businessman and philanthropist, epitomizes the intersection of science, hope, and generosity in the realm of ataxia treatment.  Diagnosed with CANVAS, a condition characterized by cerebellar ataxia and neuropathy, Denning turned to Dr. Dimitri Krainc and Northwestern University Feinberg School of Medicine’s cutting-edge precision medicine techniques for answers. In Dr....

Dr. Antonio Barbera, a former obstetrician-gynecologist living with multiple sclerosis, is prescribing an unconventional treatment for serious neurological diseases: ping pong.  His initiative, Table Tennis Connections’ NeuroPong program, launched in Fort Collins, Colorado, in 2021 and has since garnered attention nationwide. Meeting regularly at the Council Tree Covenant Church, participants engage in ping pong sessions...

Tom Lawson shares his touching story, “My Ataxia Story,” in which he discusses how receiving the diagnosis of Cerebellar Ataxia changed his life and how it affected him profoundly.  At 46 years old, married with three children, and a dog, Tom shares the emotional rollercoaster of coming to terms with a chronic autoimmune disease. From...