2019 Million Dollar Bike Ride
NEHI Research Foundation participated in the 2019 Million Dollar Bike Ride on June 8th, 2019. This event, put on by the Penn Orphan Disease Center at the University of Pennsylvania, raises awareness and funds for research into rare diseases. Patients and their families raised funds totaling $30,000 which the Penn Orphan Disease Center matched for a NEHI medical research grant of $60,989. The grant was officially announced in August 2019. More details regarding this grant opportunity can be found on our Research page.
Altogether we had 16 riders, including 2 children with NEHI, take part in the ride. Individuals rode distances of 13, 34, and 72 miles! Check out some pictures from the event below. We will be applying to take part in the ride again in 2020 and if we are selected as a rare disease team we hope to see you there! Stay tuned for more details.
Our past support of MDBR
In 2018 our founders attended the MDBR just days after launching the foundation. We attended an incredibly informative and uplifting conference put on by Global Genes in conjunction with the ride and made many invaluable connections with others in the rare disease community. Although we were not a team this year two of our board members participated in the ride to show our support for Penn Orphan Disease Center and their important mission.
A year before the launch of NEHI Research Foundation our founders attended the 2017 MDBR and associated Global Genes conference. These events added fuel to the fire we already had inside of us to start the foundation and make a difference in the lives of NEHI patients everywhere.
