The NBIA Disorders Association and its dedicated families once again made a powerful impact in this year’s Million Dollar Bike Ride (MDBR), held June 14 in Philadelphia and at local events across North America. With incredible community support, Team NBIA Disorders surpassed fundraising goals for both BPAN and INAD, raising $120,000 for gene therapy research.
Team NBIA Disorders’ BPAN initiative soared past its $50,000 fundraising target thanks to generous contributions and matching partners. Maddie B’s Army, Isabel’s Chance, and Sherri Hansen and Peter Pawlowski pledged a combined $50,000 match, doubling the impact of every dollar raised. Along with community donations and support from fellow BPAN foundations, the total raised for BPAN gene therapy at the Children’s Hospital of Philadelphia (CHOP) reached nearly $110,000.
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| BPAN families in North Carolina and Canada held community events to ride, walk, and fundraise in support of BPAN gene therapy. |
Participants from around the world joined the effort in honor of their children with BPAN. In Ottawa, Canada, Pete Roy-Smith rode alongside his family and fellow firefighters in honor of his daughter, Poppy. Meanwhile, the Smith family rallied supporters in Shelby, North Carolina, for a local ride and walk in honor of Georgia Smith. Both families have mobilized their communities for many years for this event.
In Philadelphia, a dedicated group of riders hit the streets as part of Team NBIA Disorders to honor Quinn Stronski. Representing her family were her father, Paul Stronski, uncle Andy Horowitz, and cousins Helena Horowitz and Patrick Stronski, all riding to accelerate progress in BPAN gene therapy. Their commitment, like that of many others, was instrumental in making the day a big success.
A special thank you goes to the volunteers who helped make the event possible. Among them were the Florio and Mollins families, who managed the Crefeld Street rest stop, offering hydration, snacks and much-needed encouragement to riders throughout the day.
This year, Team NBIA Disorders expanded to include fundraising efforts for multiple NBIA disorders, including INAD/PLAN. The NBIA Disorders Association pledged to match the first $5,000 raised for INAD gene therapy research, and supporters quickly met and surpassed that goal.
The combined effort raised $10,604 to support the INADcure Foundation’s gene therapy project. Among the dedicated participants was Matthew Ritzman, who rode in California with his daughter, Josie, who has PLAN, demonstrating their family’s commitment to advancing INAD research and raising awareness on the West Coast.
From Philadelphia to Canada, North Carolina and beyond, Team NBIA’s presence at the Million Dollar Bike Ride demonstrated the power of a united rare disease community. Donors included individual families, foundations, fundraising teams and generous supporters such as the Roth Family Foundation, Poppy’s Path and the Tziola family. The NBIA Disorders Association is deeply grateful to all who participated in this year’s MDBR.
Every mile pedaled and every dollar raised fuels hope for better treatments and, one day, cures.
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