Non-profit for SETBP1 Disorder Exceeds Fundraising Goal during COVID-19

Families from across the globe who have been diagnosed with a very rare neurodevelopmental disorder, SETBP1 disorder, increase total funds raised by 25% for UPenn’s Million Dollar Bike Ride.

Austin, TX— October 5, 2020 — In June, non-profit organizations from around the country expected to take Philadelphia streets by storm to participate in the 7th Annual Million Dollar Bike Ride hosted by the UPenn Orphan Disease Center. The fundraiser brings together 30+ rare disease teams, each representing a specific rare disease. The money raised by each team funds a research grant to study that specific disease. After the event, grant applications are opened to the international scientific community — scientists from around the world are eligible to apply.

Due to the impact of the rising cases of coronavirus here in the US, it was decided that the ride would be done virtually. While this decision may not have been easy, it was imperative.

“This is already a vulnerable population and we could not put them at risk. We knew that it was not an option to cancel because these families, patients, and advocates were already working tirelessly to raise money and awareness for their causes. We were not going to be another obstacle toward progress for them,” said Samantha Charleston, Director of Programs and Community Engagement for the Orphan Disease Center at the University of Pennsylvania. “As researchers and scientists, these patients and families are at the forefront of every effort we make. Science does not happen without our patient community. They are the crucial players in everything that we do. Our work starts and ends with them.”

In making the tough decision to have the Million Dollar Bike Ride fundraiser be virtual, it allowed the 80 SETBP1 families from 21 different countries around the world to not only donate, but the opportunity to participate in the event on behalf of the SETBP1 Society as well. This resulted in $80,746 in total funds being raised for SETBP1 disorder research, which is more than a 25% increase over their 2019 results.

“The need to fundraise and raise awareness of rare disorders does not stand still during a pandemic. We still move forward and take the steps necessary to advance science and answer the question – how can we improve the lives of those living with neurodevelopmental disorders, including SETBP1 disorder?” said Haley Oyler, President of the SETBP1 Society. “Our mission remains a top priority for our community.”

     Kelsey Bennett
     402-619-8695
     info@setbp1.org

For more information about the SETBP1 Society:
     https://www.setbp1.org
For more information on the University of Pennsylvania’s Million Dollar Bike Ride:
     https://www.milliondollarbikeride.org/
     https://www.setbp1.org/mdbr/