It was a gorgeous day in Philadelphia, Pennsylvania, on June 10th, 2023, when hundreds of bicyclists rode in The Million Dollar Bike Ride, a fundraiser for research of rare diseases. There were segments of 10, 32, and 70 miles available for riders to choose from. All routes began and finished in the city's center, on the University of Pennsylvania campus.
In order to fund grants for research, 39 teams participated, each representing different diseases. The fact that there is no money deducted for overhead is one aspect that distinguishes this fundraiser. The grants received all of the money that was raised.
The team riding to support and raise funds for the NR2F1 Foundation consisted of Jennifer Higgins Nicholl and her husband Eric, along with 8 other riders. They rode to raise money in the name of Maggie Nichols, their eleven-year-old daughter. When Maggie was 3 years old, she received the diagnosis of BBSOAS (Boonstra-Boonstra-Schaaf Optic Atrophy Syndrome). Jennifer, the secretary for the NR2F1 Foundation, is one of the original founders.
Developmental delay, intellectual disability, and visual impairment are the most frequent symptoms of BBSOAS, a neurodevelopmental disorder brought on by a mutation in the NR2F1 gene. One out of every 250,000 new babies is thought to be affected by BBSOAS each year. This suggests that each year, roughly 4,000 infants worldwide are born with a variation in their NR2F1 gene.
Here is what Jennifer had to say about the day.
Riding 30 plus miles is something I have never done, nor did I quite think I was capable of. However, knowing our efforts, blood, sweat, and tears (not much of an exaggeration) would benefit this mission, I was determined to do so. We were lucky enough to have a sunny beautiful day riding throughout the city of Brotherly Love and adjacent areas. We were surrounded by hundreds of other riders, also there to support their loved ones with other rare diseases. There was much love felt that day knowing the generosity of friends, family, and our NR2F1 community.
The NR2F1 Team and the board of directors want to express their gratitude to everyone for their support and contributions on behalf of Maggie and everyone who lives with BBSOAS. The NR2F1 Foundation was able to raise a total of $20,000, all of which will go into continued research.
Pictures taken of this year’s event can be seen on the Million Dollar Bike Ride website.
