Health Through Fitness in Orphan Diseases (HTFOD) is a 501(c)(3) (non-profit) organization founded in 2011 to help those afflicted with orphan diseases through a variety of ways including promoting fitness which can improve physical and emotional health.
Orphan diseases are primarily genetic in nature and 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.
Initially, the primary focus of HTFOD was the orphan disease cystic fibrosis (CF) which is a lethal genetic disease that causes excess mucus accumulation in the lungs – causing chronic infections – and in the pancreas – causing malabsorption. There is no cure for CF, although good clinical care can extend life into the 30s and 40s. The benefits of exercise for individuals living with CF are clearly documented and we had the opportunity to partner with the National CF Foundation (CFF) in raising money for research via their Cycle for Life events. HTFOD established a large network of cyclists from across the country, called Team CF, to further their mission for the disease CF. The partnership of Team CF with the CFF’s Cycle for Life events helped the CFF to raise over $6 million 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 will be accomplished through a new partnership with the University of Pennsylvania’s Orphan Disease Center (ODC) and a change in our program name to Rare Disease Cycling.
HTFOD through its program Rare Disease Cycling aims to promote fitness for those individuals with rare diseases, raise public awareness of rare diseases, and to help the Orphan Disease Center at the University of Pennsylvania raise money for orphan disease research. The bicycle will be an important tool in achieving all three objectives by: promoting fitness by getting kids and young adults on bikes for routine exercise; encouraging Rare Disease Cycling members to spread the word about its rare disease causes by participating in recreational and competitive cycling events; and partnering with the ODC for The Million Dollar Bike Ride cycling benefit on May 9, 2015 to raise money for orphan disease research.