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Friedreich's ataxia
Life doesn’t always play fair. We don’t all start with the same opportunities or outcomes, but everyone gets their hand of cards. Lily, the writer behind Retrospective Lily, compares life to poker in a relatable way. Her take? It’s all about how you play the hand you’re dealt and making the best of what you’ve...
Life is made up of a bunch of little moments, each with its special meaning.  But when we step back, we see how those small actions can make a big difference.  Just like throwing a pebble in a pond, our actions can create waves that affect way more than just us. We all want to...
Change the way you look at things, and the things you look at change. Wayne Dyer Perspective Changes Everything is how Lily Pierce feels…… Perspective means realizing that others’ life experiences may completely differ from ours. What we view as normal and what we expect depends on how we grew up, what we see around us,...
A Community Mobilized Toward Treatments The National Ataxia Foundation (NAF) is deeply committed to finding treatments and cures for Ataxia. Since its inception in 1957, NAF has strived to mobilize resources and support from the community to advance research efforts.  Sue Hagen, the Patient and Research Services Director, emphasizes the critical role of patient involvement...
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...
Healing Journey , published by Lily Pierce February 3, 2024 The last few weeks have marked the start of a new year but also brought a lot of change for me, at least in my day-to-day life. For several years now, I’ve worked out in a gym with a physical trainer. But at the end of December 2023,...
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...
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...
Recent News:  FDA approves first gene-editing treatment for human illness In the vast landscape of medical advancements, hope is a powerful force. Disclaimer:  I wrote this article after I read the above story about Sickle Cell.  Please do your own research and talk to your medical professional about the possibilities for other conditions like Ataxia....
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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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