From Awareness to Agency: How Web3 Gives People a Seat at the Table
This piece explores how Web3 transforms awareness into real agency, giving communities not just a voice, but the power to directly propose, vote on, and shape decisions that impact them.
When Tech Timelines Meet Bedtime - A CEO’s Race to Rewrite His Daughter’s Story with Rett Syndrome.
Noah Auerhahn didn’t set out to build a biotech company; he just wanted to help his daughter, and that love turned into a relentless drive to understand Rett syndrome, push through bureaucratic hurdles, and develop real treatments for Ellie and kids like her.
The Advocate Whose Soundtrack of Silence Speaks Volumes w/ Matt Hay
Matt Hay’s story is a powerful reminder that living with a rare disease isn’t about staying silent—it’s about turning every challenge into a song, a story, and a spark for change.
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Why Do Cures for Rare Diseases Take Decades? Here’s How Curetopia Is Speeding Things Up
Curetopia is accelerating rare disease research by collaborating with families, repurposing existing drugs, and conducting rapid experiments, so no one is left waiting decades for progress.
What Is a Biotech DAO?
A Biotech DAO is a new, community-driven model that brings patients, scientists, and funders together to transparently fund and direct medical research, especially for rare diseases the traditional system ignores.
The Weight He Carried: How One Rare Dad Turned Heartbreak into Horsepower w/ Jeff Allen
This is the story of a dad who walked 365 miles with the weight of his son’s rare disease on his back. Jeff didn’t just win Beast Games, he carried the invisible weight of rare fatherhood into the spotlight and showed the world what love looks like in motion.
She Found the Backdoor - One Mom’s Hack on Genetic Diagnosis w/ Julia Taravella
When medicine failed her family, Julia created her own, diagnosing AGU and developing a treatment from scratch.
A Journey Down the Yellow Brick Road: Rare Disease Edition
A rare disease journey turns one mother's heartbreak into global advocacy, fueled by love, resilience, and community kindness.
What if you have already lived the worst day of your life…..twice?
Marked by two life-altering days, Rachel’s story is one of loss, transformation, and the enduring legacy of her daughter, Rory Belle.
She used to move fast. Now she moves with purpose. And it’s changing everything.
The system builder who chose stillness: How Bina Maniar is rewriting rare disease research from the inside out.
Terry Jo Bichell Set Out to Fix Her Son’s Gene. Then She Built a Platform to Help Everyone.
Terry Jo Bichell has the mind of a scientist, the soul of a midwife, and the delivery of someone who might’ve just wandered off stage at Woodstock with a notebook full of biomarker ideas.
Diagnosis Didn’t Break Him - It Unleashed Him, with Nathan Peck of Cure VCP.
He’s got a rare kind of presence - a big southern voice and an even bigger heart. He speaks with clarity, not polish.
She Was the Footnote in a Lecture. Now She’s the One Writing the Story - with Neena Nizar.
Neena Nizar grew up in 1980s Dubai with no diagnosis, no accessibility, and no way to understand the physical pain or explain what was happening to her body.
DeSci vs. Traditional Science: What We Gain When Research Goes Public
DeSci is redefining research. Learn how decentralized science accelerates treatments, empowers patients, and breaks the bottlenecks of traditional systems.
The Secret Shortcut in Drug Discovery Big Pharma Doesn’t Talk About
Drug repurposing is faster, cheaper, and often overlooked. Learn how Curetopia is unlocking hidden cures through decentralized, community-led science.
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