I’m Rare. And I’m Building for All of Us

I’m Rare. And I’m building for all of us.

By Michael H. Goldberg, Founder | CEO MediXo By 12 Brand

Earlier this week, I tuned into a Congressional Caucus Briefing focused on regulatory urgency and therapeutic opportunity in the rare disease space. The voices were powerful—advocates, foundation leaders, and families speaking with clarity and conviction. And as someone living with a rare disease, I didn’t just hear them. I felt them.

Judi and I founded Hugs For Mito to fight for families like ours. That chapter may have closed, but the mission didn’t. Today, that fight continues through MediXo By 12 Brand. Every strategic move we make, every partnership we explore, every pledge we commit to—it’s all rooted in lived experience and a promise to protect.

Regulatory urgency isn’t just policy—it’s survival. Every delay costs more than time. It costs muscle, momentum, and hope. When programs are paused, families lose ground they may never recover. When patient voices are dismissed as anecdotal, we lose the very data that could drive discovery.

That’s why I stand with the rare disease community in calling for change. Patient testimony is data. And our community deserves therapies that move at the speed of need.

At MediXo, we’re building toward a future where dignity, autonomy, and access are non-negotiable. We’re not waiting for the system to catch up—we’re designing with urgency, empathy, and purpose. The work ahead is rare and complex, but the mission is simple: protect what matters, and build what heals.