Beyond CF: A Rare Disease Conversation with the Goldbergs

Rare disease connects more people than many of us realize. While every diagnosis is unique, the journey often includes many of the same challenges: searching for answers, navigating the healthcare system, advocating for better care, managing complex treatments, and finding hope along the way. Cystic fibrosis is considered a rare disease because it affects fewer than 200,000 people in the United States, just like mitochondrial disease. Although these conditions are different, the experiences of patients and families often have much in common.

Our guest is Michael Goldberg, a rare disease patient, advocate, entrepreneur, and author. Michael and I connected on LinkedIn, and I'm so glad he reached out because his story is one that will resonate with anyone whose life has been touched by a rare disease.

Michael lives with a rare mitochondrial disease and has turned his personal experiences into a mission to help others. He's the Founder and CEO of 12 Brand | MediXo, a patient-led health technology initiative focused on medication adherence, dosing accuracy, and preventive health. He also helps fund research and community programs. Right by his side is his wife Judi. We talk with her about the challenges about being a caregiver, and how that can change a marriage. They're beautiful marriage and upbeat, positive attitude will inspire you.

Michael is also the author of I'll Have Mine Rare and I'll Have Mine Rare: Growing Up Different. In this episode, we talk about advocacy, caregiving, resilience, and why the rare disease community is stronger when we learn from one another. Whether your family is affected by cystic fibrosis or another rare disease, I think you'll find inspiration and encouragement in Michael's journey.

To get in touch with Michael Goldberg: info@medixo.health

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