02/28/2026
To my fellow parents of children with ZARD, family & friends, walking this ultra-rare journey, you already know what it feels like to live in a world where answers are limited, research is underfunded, and progress can feel painfully slow.
But you also know something else:
❤️ We are fierce.
❤️ We are resilient.
❤️And when we come together, we are unstoppable.
On June 13, 2026, families from across the world will gather in Philadelphia for the 2026 Million Dollar Bike Ride hosted by the Penn Medicine Orphan Disease Center, a day dedicated entirely to accelerating research for rare diseases like ours. We are excited to announce Team ZC4H2 will ride again!
This isn’t just a bike ride.
It’s hope in motion.
It’s advocacy on wheels.
It’s a powerful reminder that our children deserve research, treatments, and a future filled with possibility.
Every dollar raised for Team ZC4H2 goes directly to research. Additionally, the ZC4H2 Research Foundation will match donations up to $15,000, doubling the impact of what we raise together. That means your effort, your voice, your fundraising page could literally help move science forward faster.
If you’ve ever felt:
• Frustrated by the lack of answers
• Overwhelmed by how rare your child’s diagnosis is
• Determined to create change
• Grateful for this community who truly understands
This is your invitation.
You don’t have to be a cyclist.
You don’t have to be in the area.
You don’t have to raise thousands of dollars.
You just have to care & I know you do.
Join us. Fundraise. Share. Show up.
From near & far.
Showing up can be in person or as a virtual cyclist! Fundraising efforts can take place anywhere!
Let’s turn our shared challenges into collective action.
Because our kids are worth the miles.
They’re worth the research.
They’re worth the fight.
I have added the link to Team ZC4H2 below & in the bio. Let’s ride for answers, together. ❤️
https://charity.pledgeit.org/MillionDollarBikeRide/teams/
