Mary Hogan’s journey delves deep into her family’s genealogy, unraveling the mysteries of a pervasive genetic disorder known as SCA27B.  Unlike the casual exploration many people undertake on genealogy websites, Mary’s journey is driven by a profound familial connection to Ataxia SCA27. Which has afflicted numerous members of her family. Nicknamed the “Darby Glide” in...

Sam Blade, a vibrant 25-year-old from Sydney and Melbourne, graciously shares his journey with Friedreich’s Ataxia (FA) in an interview with FARA Ambassador Dragana Obadic. Diagnosed at 15, Sam navigates the complexities of FA with resilience and determination, finding new passions and redefining his purpose along the way. Despite the challenges posed by FA, Sam...

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...

The National Ataxia Foundation (NAF) is breaking new ground in the world of Name, Image, and Likeness (NIL) partnerships. With a focus on raising awareness and funds for a rare neurodegenerative disease known as Ataxia.  Athletes from the University of Minnesota, Oklahoma State, Stanford, and the University of Miami have joined forces to support research...

Life is a dance. Mindfulness is witnessing that dance. Amit Ray In the first part, A Snapshot of My Journey, I described some of the challenges I have had. But now, let’s turn the focus to positive things. I have shared articles on here in the past about our mindset, being grateful, etc.   Yeah, the past...

Life gives you plenty of time to do whatever you want to do if you stay in the present moment. Deepak Chopra Life’s had some challenges for me in the past couple of months.  However, even with everything, I am more excited about the future than I have been in a while.  So, the theme...

In her illuminating piece, “About Brain Donation – Have You Ever Wondered?”, Mary Ann Peterson, NAF Research Associate, delves into the profound impact of brain donation in the fight against Ataxia. With touching insights from both donors and their families, as well as individuals directly affected by the disease, Peterson sheds light on the importance...

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...

Originally published October 2019 Guest Authors: Sheng-Han Kuo MD, Chen-Ya Yang, MD, MPH, and Geraldine Yu, PT, DPTTechnical Support: Tiffany Chen BS, Johns Hopkins University Ataxia is a neurologic disorder that affects people of all ages. People living with Ataxia may experience problems including incoordination of movement, slurred speech, poor balance, and gait abnormalities. Neuromotor exercises and...

Let’s meet Krystal Schulze, whose journey with Ataxia took an unexpected turn due to a brain tumor. Discovered during her high school years.  Krystal shares her courageous story of resilience and adaptation as she navigates life with Acquired Cerebellar Ataxia (ACA). Diagnosed at the age of 18, Krystal’s life took a drastic turn as she...