Diagnosis Didn’t Break Him - It Unleashed Him, with Nathan Peck of Cure VCP.

You don’t forget meeting Nathan Peck.

He’s got a rare kind of presence - a big southern voice and an even bigger heart. He speaks with clarity, not polish. The kind of guy who tells you the truth straight-up but leaves you feeling braver for having heard it. He’s got a self-proclaimed chip on his shoulder and zero patience for bureaucracy or bullshit - but more than enough for people who are trying. Nathan is all in. Not performative. Solid. Like the big brother who can fix your radiator with one hand and talk you out of a dumb life choice with the other. I liked him immediately when I met him years ago - he’s a carbon copy of my Montana brother. That same steady presence. That same fire.

Nathan’s not trying to be everyone’s cup of tea. He’s trying to make sure VCP disease doesn’t get passed down to one more generation without a big fight.

He’s a husband to Allison - his loving rock and rare disease co-general - and a father to three boys.

“I knew I had a 50% chance,” Nathan told me. “Since I was a freshman at Georgia Tech, I had a clock ticking in my head.”

VCP-associated multisystem proteinopathy - also known as IBMPFD - is a fatal, hereditary disease caused by mutations in the VCP gene. It can hit muscles, bones, and the brain with symptoms ranging from ALS to brittle bones to dementia. Nathan watched his mother suffer with it for two decades. Saw his father become her full-time caregiver. Watched the future unfold in real-time. And so he lived like he had no time to waste. Not because he was reckless - but because he was clear eyed and all in.

He chased big moves. Big jobs. Big schools. Left a six-figure salary to attend MIT with two young kids and a third on the way. His oldest had lived in six states by age nine.

It wasn’t just ambition. It was preparation - for his family, for what might come. And eventually, it did.

At 38, Nathan tested positive for the mutation. His diagnosis didn’t come with a treatment - just confirmation and a quietly looming future. By his early 40s, he was declared 100% disabled. He went from running companies to carefully budgeting his physical energy for everyday tasks. He can no longer take his boys camping, or shoot hoops in the driveway. “I wish I could still do dad things,” he says.

With all that VCP has already taken from him - he still sounds like a man who can fix anything. Like someone who won’t let you off easy, but will always show up.

And show up he did.

In 2018, Nathan and Allison founded the Cure VCP Disease out of their living room in Georgia. At first, they didn’t even know what patient advocacy meant. “It wasn’t something I wanted to do,” he admitted. “It wasn’t until Global Genes 2018 that I realized - I didn’t really have a choice. This was it. This was the purpose.”

The foundation started small but grew intentionally, strategically, and fast. Just this spring, they celebrated one of the biggest wins in their history - the publication of their two-year prospective natural history study - Validity and Reliability of Clinical and Patient-Reported Outcomes in Multisystem Proteinopathy 1 in the Annals of Clinical and Translational Neurology.

This paper is more than a milestone - it’s proof of what’s possible when a community of patients, scientists, and caregivers refuses to wait. Cure VCP Disease identified their biggest gap - measuring disease progression - and didn’t wait for a government grant or permission from a big academic lab. They hired Nationwide Children’s Hospital. They helped patients travel. They layered in remote measures. And they built something the rest of us can now learn from.

That kind of clarity and the ability to block out what “everyone else” is doing and build what’s actually needed is what defines Nathan’s leadership. “You can’t just benchmark your way to progress,” he told me. “Every disease is different. Every community is different. We didn’t even have a scientific advisory board for the first five years. I didn’t want the politics. I wanted speed.”

This work isn't for show. It's for his boys. “All the work we’re doing - they understand. They see it. My older two are in our young adult program. They’re already care partners. They help me get up when I fall.”

Cure VCP Disease's new program, 'A New Hope', funded by Alexion, is designed to support young adults who may be both future patients and present caregivers. It’s a model that could be replicated across ultra-rare disease communities. Like everything Cure VCP Disease does, it’s deeply personal - and designed to be shared.

Nathan still questions most traditional grant structures. He pushes back on systems that reward overhead instead of outcomes. He believes in building community and infrastructure as much as research - and he’s willing to say the quiet part out loud when it comes to rare disease advocacy.

“I want to know people are leaving it all out there,” he told me. “I know I am. Can they say the same?”

He doesn’t lose sleep over much these days - except maybe his kids. What gets him out of bed? “Honestly,” he told me, “I get sore if I lay down too long. And the pool helps." Swimming loosens his muscles. Keeps him moving. Keeps him grounded. That and rewatching 'Andor,' the Star Wars series. “I’ve seen it five times,” he says. “It’s how I relax when rare disease gets on my nerves.”

I couldn’t help but laugh at his nerdy comfort show. But it’s also the perfect metaphor because Andor is the prequel to a rebellion. The origin story of someone who didn’t ask to be the hero but couldn’t ignore the mission once it found him.

That’s Nathan. A little beat up. Still showing up. Maybe even more dangerous because of it.

And VCP disease? It should be very worried it picked the wrong guy.

-By Effie Parks, CTNNB1 mom & storyteller at Once Upon a Gene. Bearing witness. Following starlight. Carrying the fuel.

Written for the Curetopia story series - real families, real stakes, and the science that just might catch up because of it.

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