Rare Disease Cycling is an evolution of our previous cycling group called Team Cystic Fibrosis (CF) whose goals were to raise awareness and money for research for the rare disease CF. In 2014, we decided to expand the scope of our mission to include all rare diseases and to change the name of the Team to Rare Disease Cycling to more accurately reflect its expanded mission.
Team CF was established under a 501(c)(3) called Health Through Fitness in Orphan Diseases (HTFOD). Orphan diseases are a diverse mix of primarily genetic disorders which by definition are individually rare, but collectively represent a substantial health care burden. Orphan diseases are also called rare diseases to reflect their low prevalence. Most orphan diseases manifest in children with premature mortality and/or significant disability. Unfortunately, there are few if any effective therapies for rare diseases due in part to the reluctance of biopharmaceutical companies to invest in research, because downstream revenues will be limited due to the small markets. The tragic irony is that diseases that are the least studied (i.e., orphan diseases) happen to be the ones which are the most likely to benefit from emerging new therapeutic platforms such as protein, cell and gene therapies.
We decided to launch the mission of HTFOD focusing on CF since the benefits of exercise were clearly documented and the opportunity to partner with the National CF Foundation in raising money for research. In our first four years, Team CF recruited over 120 cyclists from 28 states including Elite and Amateur racers and partnered with the CF Foundation to establish a network of over 50 cycling benefits (called Cycle for Life) across the United States that collectively raised over $6 mil for CF research. The tremendous success in the context of this focused partnership compelled us to think about expanding the model to impact on a greater array of rare diseases. This has been accomplished through a partnership with the University of Pennsylvania’s Orphan Disease Center (ODC) and a change in our name to Rare Disease Cycling in 2014.
The goal of Penn’s academic center is to promote the development of therapies across a broad range of orphan diseases. In order to assemble a critical mass of intellectual and patient resources for any one disease, the ODC will have to reach beyond the borders of Penn and promote inter-institutional collaborations/partnerships. It is hoped that seed investment in promising research and aggressive outreach will encourage the biopharmaceutical industry to enhance their support of orphan diseases.
The alignment of goals between the Penn ODC and Rare Disease Cycling led to a formal collaboration between these non-profit organizations. This collaboration has been facilitated through the dual roles of our director; both as a Professor at Penn who played a key role in founding the ODC and as Founder and as President in Rare Disease Cycling and its associated 501(c)(3). The first objective of this collaboration was to organize a cycling benefit to raise money for research in rare diseases. Individual patient advocacy groups register for the event and recruit participants to raise money for their specific cause. All money raised by event participants is used to fund research grants; Penn has secured dollar-for-dollar matching funds for all individual pledges that are secured by participants of the benefit ride. Following the event, the ODC sends out an international RFA to solicit grants related to the diseases for which money was raised. The Center and its advisors will award and manage the grants.
The inaugural Million Dollar Bike Ride (MDBR) was held in Philadelphia on May 3rd, 2014 and was a resounding success having over 540 registered cyclists and raising over $1.4 million for rare disease research. Rare Disease Cycling assumed full responsibility for conducting the event. For the second annual MDBR on May 9, 2015, the ODC once again partnered with Rare Disease Cycling for another successful event. Teams raised over $770,000, which along with matching funds, will result in over $1.3 million in research awards for the second year. Stay tuned for the third annual MDBR in May 2016.
100% of the money raised goes to research and is matched dollar-for-dollar through the generous support of philanthropists.
President and Chairman of the Board:
Board of Directors:
Secretary – Lisa Wilson
Treasurer – Monique Molloy