The Million Dollar Bike Ride for Orphan Disease Research

08/14/2026

📢 LOIs are now open! In partnership with the disease teams who participated in the 2026 MDBR, this year's Pilot Grant Program is offering one-year research grants for CADASIL and CDG. These are open to researchers worldwide.

Deadline: Sept 18, 2026, 8pm ET
Apply: bit.ly/MDBRgrant2026 🚴💛

07/31/2026

📢 New Funding Opportunity: MAST Genes Research Foundation Pilot Grant Program 2026

The Orphan Disease Center (University of Pennsylvania / CHOP) and the MAST Genes Research Foundation are now accepting Letters of Interest for the 2026 Pilot Grant Program, supporting research on MAST1–4 related neurodevelopmental disorders.

🔬 What's funded:
Two awards of $50,000 (total costs) for up to 12 months, supporting projects that advance:
1️⃣ Disease mechanisms & variant-level biology (kinase activity, signaling, genotype-phenotype correlations, model systems)
2️⃣ Therapeutic approaches (small-molecule screening, gene-targeted/RNA therapies, HTS assay development)
3️⃣ Multi-investigator & interdisciplinary collaboration

👥 Who can apply:

Faculty-level investigators at academic institutions
Senior investigators at nonprofit research organizations
International applicants welcome
Early-career investigators/postdocs (with documented mentor & institutional support)

📝 How to apply:
A 1-page Letter of Interest is required before a full application is invited.

⏰ LOI Deadline: August 28, 2026, 8:00 PM ET

🔗 Submit your LOI and review full RFA guidelines here:

MAST GENES RESEARCH FOUNDATION PILOT GRANT PROGRAM The MAST Genes Research Foundation is pleased to announce the 2026 MAST Genes Pilot Grant Program, which will support two investigator-initiated research projects aimed at advancing the biological understanding of the MAST genes and/or accelerating

07/16/2026

🎉 Exciting news for the rare disease community!

Children's Hospital of Philadelphia has secured a five-year, up to $38.9 million award from ARPA-H's THRIVE program to advance personalized gene editing therapies for rare, liver-related genetic disorders, including urea cycle disorders, organic acidemias, severe clotting disorders, and hemophilia A.

We're proud that our own Kiran Musunuru, MD, PhD, MPH, ML, MRA, Co-Director of the Orphan Disease Center (a CHOP and Penn Medicine partnership), is part of the team leading this work, alongside CHOP's Rebecca Ahrens-Nicklas, MD, PhD and Lindsey A. George, MD.

This award builds on the landmark treatment of baby KJ Muldoon, whose personalized CRISPR gene-editing therapy, led by Dr. Ahrens-Nicklas and Dr. Musunuru, was the first of its kind in the world. Now that breakthrough is being scaled into a platform that could reach many more children with life-threatening rare diseases.

Congratulations to the whole team. This is exactly the kind of collaborative science the Orphan Disease Center exists to support. 🧬

Read more: https://www.chop.edu/news/childrens-hospital-philadelphia-secures-five-year-389-million-arpa-h-award-advance

CHOP announced today that it has been awarded a five-year up to $38.9 million award from the Advanced Research Projects Agency for Health (ARPA H) THRIVE program to support the advancement of personalized gene therapy. Rebecca Ahrens-Nicklas, MD, PhD Children’s Hospital of Philadelphia (CHOP) anno...

06/18/2026

🧡 The Heart and Soul of the Ride: Thank You, Volunteers! 👋
The 13th Annual Million Dollar Bike Ride simply would not happen without our incredible army of volunteers!

From the crack of dawn until the very last box was packed up, our excellent volunteers brought the energy, the smiles, and the hard work. Just check out this pep squad! Whether you were greeting participants at registration, handing out water at rest stops, cheering on our riders and walkers, or helping everything run smoothly behind the scenes: YOU made the magic happen.

Your time and dedication mean the world to us and to all of our rare disease teams. Thank you for showing up for this community and making it such a beautiful, seamless day for everyone involved.

We appreciate you more than words can say! 🩵

06/17/2026

🛠️ Route Coordinator Spotlight: Thank You, Nikki! 🗺️
Putting on an event like the 13th Annual Million Dollar Bike Ride takes a village, and today we want to give a massive shoutout to one of our absolute MVPs: our route coordinator, Nikki!

Year after year, Nikki shows up with unmatched dedication and hard work. Long before the sun comes up and the first riders cross the start line, Nikki and her incredible team are out on the roads. From meticulously marking the courses to managing the logistics, they make sure every single participant and walker stays safe and on routes.

An event with multiple routes and hundreds of moving parts doesn't happen without this kind of leadership. Nikki, we are so incredibly grateful for your commitment to our mission and for keeping our rare disease community safe out there.

Please join us in thanking Nikki and the rare disease cycling team! 🩵👇

06/16/2026

06/16/2026

🚴‍♂️ We Came, We Rode, We walked, We Made an Impact! ✨
The energy at the 13th Annual Million Dollar Bike Ride was unforgettable. It was truly such a beautiful, magical day of community and connection.

We are still floating on air. To every single participant who pedaled through the miles, everyone who joined us for the beautiful one mile walk, every volunteer who cheered until their voices were gone, and every supporter who donated: THANK YOU.

A massive, heartfelt shoutout to our incredible rare disease teams. Your passion, dedication, and energy are the driving force behind this entire event. Seeing our community come together, unified in hope and purpose, is a powerful reminder of what we can achieve when we move as one.

Because of you, we are moving the needle forward for rare disease research and initiatives. 🩵

Drop your favorite moments or photos from the ride or walk in the comments below! 👇

06/08/2026

🚴‍♂️ Avoid the Line (and the Fee!): Early Packet Pick-Up 🚴‍♀️
The 13th Annual Million Dollar Bike Ride is almost here! Want to cruise straight to the starting line on Saturday morning? Grab your rider packet early!

⚠️ Reminder: If you don't pick up your packet ahead of time, there will be a $10 day-of fee to collect it on Saturday morning. Save your cash for a post-ride treat and get your gear early!

📅 When & Where

Wednesday, June 10th from 11-3pm
Thursday, June 11th from 11-3pm
Friday, June 12th from 11-7pm

Location: Class of 1923 Ice Rink - 1 Jone Way

🤔 Can't make it yourself?
No problem! A friend or teammate can pick up your packet for you. Just make sure they have a copy of your registration confirmation email.

Beat the race-day rush, support rare disease initiatives, and help us keep Saturday morning moving smoothly. See you there! 🙌