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Rare Disease
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...
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...
Let’s be real: 99% of people don’t know what ataxia is in the first place. In fact, my first and most common misconception could be “No, actually, I don’t have multiple sclerosis, thanks for asking…” I wrote an article recently explaining what ataxia is, and here I’ll tell you about the most common things people ask...
October 27, 2023 WASHINGTON, D.C. – This week, U.S. Reps. Mike Kelly (R-PA-16), Congresswoman Doris Matsui (D-CA-07), Reps. Neal Dunn (R-FL-02), and Mike Thompson (D-CA-04), introduced the Providing Realistic Opportunity To Equal and Comparable Treatment for Rare (PROTECT Rare) Act. This legislation will support rare disease patients. In getting evidence-based, medically necessary care covered by their health insurance. Over 90%...
Linda’s journey with Ataxia began in her childhood, marked by medical challenges and diagnoses that ultimately led to the discovery of her condition, Ataxia Oculomotor Apraxia type 2 (AOA2).  Despite facing numerous obstacles, Linda’s resilience and determination have propelled her to become an advocate for Ataxia awareness in South Africa. From a young age, Linda...
Alex Fielding’s life took an unexpected turn when he was diagnosed with Friedreich’s Ataxia (FA) in his mid-twenties.  Despite the challenges posed by this rare, progressive disease, Alex has found ways to maintain his independence and make meaningful contributions to the FA community. Returning to Rhode Island and finding solace in family support, Alex channels...
Population Estimate:  Fewer than 1000 people in the U.S. have this disease. Imagine waking up one day and finding it increasingly difficult to control your movements. Simple tasks like walking, writing, or even eating become monumental challenges.  This is the harsh reality for those living with ataxia, a group of neurological disorders that affect coordination...
As I write this, I’m on my second day of taking the only FDA-approved medication for Friedreich’s Ataxia – Skyclarys, also known as Omaveloxolone. Friedreich’s Ataxia is a rare condition that causes progressive damage to the spinal cord, peripheral nerves, and the brain, resulting in uncoordinated muscle movement, balance issues, walking difficulties, and more. It’s...

My purpose

michael mantz
To continuously empower others on building healthy lifestyles where personal/spiritual growth is prioritized, the pursuit of positive mind-body change is valued, and the notion of making the most out of life is a core motivation. In addition, to raise overdue Ataxia Awareness and spark meaningful perspective shifts that both present-day society and future generations can mutually benefit from.

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