Being Rare Podcast

06/11/2025

For Michael, visibility is more than recognition — it’s helping others move from discomfort to understanding. It’s about creating space where family, friends, and coworkers feel comfortable enough to ask, listen, and support. Michael reminds us that awareness is the comfort to help, encourage, and understand.

Check out the full episode where Michael opens up about what true awareness means for those living with rare or invisible conditions like Ataxia SCA15.

Find Being Rare wherever you stream your podcasts and on YouTube!

https://theewefoundation.org/podcast

05/11/2025

Halfway through writing his memoir — a deeply personal story of resilience, challenge, and triumph, Michael wants readers to take away two things: awareness of the body and illness, and the universal truth that we all fall and get back up.

For anyone navigating struggles — big or small — this book is a reminder to embrace your vulnerability and persistence!

Check out the full conversation with Michael on the Being Rare Podcast! Find it wherever you stream your podcasts and on YouTube!

https://theewefoundation.org/podcast

04/11/2025

Michael Mantz, living with Ataxia SCA15, shares how writing and storytelling have become more than just personal expression — they’ve become a mission. Through his blog, his memoir, and his work with Inspire Thread, he’s embracing vulnerability to raise awareness, connect with others, and make a difference.

Raw, honest, and unapologetically real — Michael reminds us that sharing our stories can give purpose to our journey. Check out the full episode wherever you stream your podcast and on YouTube!

https://theewefoundation.org/podcast

30/10/2025

New episode alert!

For years, business owner, writer, and advocate Michael Mantz experienced symptoms no one could explain. Now diagnosed with Ataxia SCA15, he’s turning uncertainty into purpose — through storytelling, creativity, and visibility.

In this episode of the Being Rare Podcast, Michael joins Sarita to talk about:
- Living through the unknown before diagnosis
- Finding identity through writing and resilience
- Creating Inspire Thread, a brand for rare and invisible warriors

Listen now wherever you get your podcasts! Watch it on YouTube!

https://youtu.be/ZmWZotw9llE
https://spotifycreators-web.app.link/e/zr5MEleATXb

12/09/2025

When facing a rare disease, it’s not just about enduring—it’s about fighting forward with determination and resilience. In this episode, we talk about what it means to meet a diagnosis head-on and keep moving forward, no matter what!

Tune in the full episode here: https://youtu.be/G05CoWcHWOA?si=nUF2Syp5WCbYPrEq

10/09/2025

"It took forever for my local doctor to believe I had a problem.” This is a reality we hear far too often in the rare disease community. Delayed diagnoses leave patients and families feeling unheard, overlooked, and at a disadvantage. In this episode, we talk about why listening matters — and why recognizing rare diseases sooner can change lives.

Tune in to the full episode here: https://youtu.be/G05CoWcHWOA?si=MX3dTIf4jjv2Orgp

08/09/2025

So many people living with rare diseases need their people. Sometimes it’s not about big answers, but the little things — where to stay, where to eat, where to park at a hospital you’ve never been to before. Having a network makes all the difference. In this episode, we talk about the power of community and connection. Tune in to the full episode here: https://youtu.be/G05CoWcHWOA?si=q5uTrVsQlakR-AL0

05/09/2025

In this episode of the Being Rare Podcast, Sarita is joined by Swapna Kakani and Jasmine Hightower - and briefly by Brooke Thomas - to talk about newborn screening and state level advocacy. Check out the full episode here:

In this episode Sarita is joined by Swapna Kakani, Jasmine Hightower, and briefly by Brooke Thomas to talk about newborn screening, state advocacy, and the i...

28/08/2025

New episode alert! In the latest episode of the Being Rare Podcast, Royce Robertson opens up about navigating rare disease care and how cycling raises awareness, funds, and promotes health equity for patients fighting sarcoidosis.

Tune in today on YouTube https://youtu.be/G05CoWcHWOA and wherever you stream your podcasts!

https://open.spotify.com/show/3Qzp9jP8cwXCAOFs3o3MUX

26/08/2025

New podcast episode this Thursday, August 28th at 2:00pm CST. Tune in on YouTube or wherever you stream your podcast!

19/08/2025

I started the Being Rare Podcast to share OUR story—alongside the stories of others living with rare diseases and the organizations that support us. Born from a place of lived experience and advocacy, our mission has always been about giving voice to those whose stories often go unheard.

From monthly episodes to our bite-sized “1-Minute Monday” series—we hope to offer insight, inspiration, and solidarity. Yes, things get quiet sometimes, and the episodes may come at a slower pace... but make no mistake: We are still here and we're still recording!

Check out a recent episode on YouTube or wherever you stream your podcasts! Thank you for listening, sharing, and walking this journey with us.❤️ https://theewefoundation.org/podcast

New episode coming soon!

16/08/2025

The E.WE Foundation is a global healthcare advocacy organization supporting families affected by Trisomy 18 and other rare diseases. Check out our website to learn more https://theewefoundation.org