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What is Ataxia
April 2024: After 25 years of research, scientists at the University of Utah have uncovered the genetic cause of Spinocerebellar Ataxia 4 (SCA4), a rare and progressive neurological disorder. This discovery gives affected people hope for future therapies. Spinocerebellar Ataxia 4 (SCA4) is a rare, debilitating condition that disrupts movement. Symptoms often start with difficulty...
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...
Life is about accepting the challenges along the way, choosing to keep moving forward, and savoring the journey Roy T. Bennett In Richard’s insightful blog post, he shares his journey of adapting to life with Ataxia through practical solutions and supportive technology.   When he and his wife moved into their forever home in 2013,...
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...
Individually, we are one drop. Together, we are an ocean. Ryunosuke Satoro As a person with a lifelong movement disorder, I understand the challenges that we all face living with Ataxia.  We see the world differently than most!  But through the ups and downs, there’s a definite spirit of resilience.  We are all living our...
In the face of serious diagnoses like Parkinson’s disease, family caregivers emerge as unsung heroes, providing invaluable support to millions of patients worldwide.  As symptoms progress, patients often rely on caregivers for assistance with daily tasks, medical appointments, medication management, and navigating the complexities of healthcare systems.  With their help, many patients can maintain independence...
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...
Getting a new diagnosis, especially one that brings life-changing challenges, can feel like you’re stepping into a world you didn’t choose.  It’s overwhelming and confusing, and you’re likely flooded with questions.  How will this impact your future?  What will it mean for your relationships, dreams, and future?  While every diagnosis journey is unique, the feelings...
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My purpose

michael mantz
Life rarely goes as planned. This blog is about navigating what actually happens – major disruptions, health challenges, and the quieter work of figuring out who you are through all of it. I write from inside that process. I have Spinocerebellar Ataxia (SCA 15), a rare neurological condition that shapes my perspective but doesn’t define this space. Some articles are personal. Some are practical. All of them are honest.

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