RomansRiders

Our Roman has been living with KCNT1 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 area also riding for all our KCNT1 friends in heaven lost to this condition and their families, as well as all the other rare disease warriors and their families out there who never give up.

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.