September 2022
By Vanessa Smith
For the sixth year in a row, NBIA families came together for the Million Dollar Bike Ride and raised more than enough to win a significant matching grant to advance BPAN research.
Team NBIA raised $38,735 from supporters, plus $1,040 in registration fees, for a total of $39,775 and won a $30,000 match from the University of Pennsylvania’s Orphan Disease Center. That will enable the NBIA Disorders Association to offer a $69,775 BPAN research award in the 2022 UPenn grant call now underway.
Interested researchers have until Sept. 16 to submit letters of intent, with full applications by invitation due by Oct. 17. More information and links to upload letters of intent can be found here.
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Like previous Million Dollar Bike Ride awards, UPenn’s Orphan Disease Center will manage the BPAN research grant, with our organization writing the application criteria and selecting the grant reviewers. The funding period runs from Feb. 1, 2023, to Jan. 31, 2024.
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Volunteers Yiota and John Anastasiasis |
For the first time in three years, the ride was held in person, in addition to retaining a virtual aspect that began in 2020 because of the pandemic. For the in-person competition June 11,18 riders representing Team NBIA Disorders gathered at UPenn, along with volunteers Kristi Florio of Boalsburg, Pennsylvania, and John and Yiota Anastasiadis of Andover, Maryland. The volunteers manned a rest stop, handing out water and snacks to cyclists.
Virtual participants rode in their own towns, allowing for many more NBIA families to participate than would have otherwise been possible. There also was a virtual spin class June 6 as another way to take part.
The association’s sister organization in Germany, Hoffnungsbaum e. V., participated virtually for the third year, contributing $4,867 toward the total.
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German participants Noah Rusch and his family have a fundraiser for the second year benefitting the MDBR. Noah's son Laurin has BPAN. |
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| Matt and Julie Ritzman of Oakland, California, riding at the MDBR in Philadelphia on June 11. |
Matt Ritzman, chair of the NBIA Disorders Association board and an avid cyclist, participated in person with his wife, Julie Ritzman. Their daughter, Josie, has an ultra-rare form of NBIA known as PLAN.
They traveled from Oakland, California, to UPenn, choosing to ride the longest route, 70 miles, through the rolling hills of the Pennsylvania countryside. After two virtual rides, they said they were excited to finally be able to ride in person, with other participants. "It filled me with joy and excitement that is harder to manufacture when riding around my neighborhood at home," Matt said.
He felt that overall it was a fantastic ride with nice weather, wonderful volunteers, and an amazing sense of community. He shared that he was inspired to see so many NBIA families taking part.
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| Jennifer and Sophia Sanchez participated virtually in the MDBR by riding in their neighborhood. |
Virtual riders representing the NBIA Disorders Association also said they enjoyed the experience. One of them, Sophia Sanchez, a 16-year-old with BPAN from Houston, has been riding her adaptive bike with assistance from her mother, Jennifer Sanchez, for the past seven years. When the chance came to take part in an activity she loves to fight against BPAN, they took action, logging 26 miles divided into 2-mile increments.
With each step I took and each revolution of the crank arm and pedals, we delivered a powerful blow right in the face of BPAN,” Jennifer said, “I never felt so empowered, and I was so happy Sophia and I were doing this together!”
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| Tiffany Smith of Shelby, North Carolina, participating on June 6 in the MDBR virtual spin class. |
Another virtual rider, Tiffany Smith of Shelby, North Carolina, rode on her stationary bike and attended the spin class. She spoke of her passion to ride in honor of her 4-year-old daughter, Georgia, who has BPAN.
“This girl is the reason I ride, and advocate, and research, and fight, and smile,” Smith said. “She has changed my whole world and I’ll do anything in my power to help her have a better chance at a better quality of life. Without these funds being raised, we can’t move forward towards treatment, towards relief, towards a cure.”
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| Team NBIA Disorders riders and their families that made it to the MDBR 7 a.m. photo opportunity on ride day. |
