In a poignant narrative shared by Alaysha’s mom and featured by the National Ataxia Foundation, we are offered a glimpse into the life of a courageous young girl battling ataxia-telangiectasia (A-T). Alaysha’s journey with ataxia began with uncertainties in infancy, leading to a general diagnosis of ataxia. Despite seeming to outgrow her wobbling, her symptoms...

Martha Strange’s journey with Parkinson’s disease led her to a point where her cherished activities, like playing with her granddaughter and enjoying a round of golf, seemed like distant memories. However, a consultation with neurosurgeon Dr. Guy McKhann at Columbia University Medical Center/NewYork-Presbyterian Hospital changed everything. Dr. McKhann suggested deep brain stimulation, a procedure designed...

Rare Disease Day: An Insight into SDG Resources and Global Awareness Initiatives Rare Disease Day is an annual global event that brings attention to rare diseases and the millions of people affected by them. It is held on the last day of February, with the primary aim of raising awareness among the general public, healthcare...

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,...

Breaunna Hoffman’s story is one of resilience and adaptation in the face of life-altering challenges. Diagnosed with Friedrich Ataxia at just fifteen years old, her world shifted dramatically.  Previously an active teenager involved in sports and cheer, she faced the reality of a neuromuscular disorder that would gradually change her life. Despite the initial devastation...

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....

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...