Roman’s Riders

Fundraiser Profile

Participating in 2025 Million Dollar Bike Ride

Member of Team KCNT1

My Mission for Rare Disease Research

Our warrior Roman has been living with KCNT1 related epilepsy since 2017. We are riding for the research to stop this mutation in its tracks, before it alters the route of another life and family. We are riding for his power, his voice, his quality of life and for his mom and other caregivers who would give anything to take his suffering away and give him the future we dreamed of.

We are also riding for all our KCNT1 warriors in heaven who lost their life to this disease and their families. The Penn Medicine Orphan Disease Center hosts this event to raise money for research in rare diseases. Please consider donating to our cause and being a part of transformative research. 100% of your donation will go towards rare disease research.

You have no idea what this opportunity for research on this condition means to families like ours- we never dreamed anyone would even care about this condition since it affects a smaller group of people than other diseases that are more common. It’s incredible and gives us hope when hope has been very hard to find living in the shadows of rare disease isolation.

Donations 34

Organizations participating in the 2025 Million Dollar Bike Ride will receive the funds raised by their team. Your donation plays a pivotal role, allowing organizations to not only support rare disease research, but make a direct impact on patients and families in their rare disease community. Thank you!

Million Dollar Bike Ride is coordinated by Penn Medicine's Orphan Disease Center. Funds from the 2025 Million Dollar Bike Ride are being distributed to teams through partnership with rare-disease nonprofit, Uplifting Athletes.