Jamie Roach's Contact Details

Jamie Roach's Company Details

IFOPA

Kansas City, MO, US • 20 - 49 Employees
Scientific Research

The International FOP Association is a 501(c)(3) non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). FOP is one of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.Our mission is to fund research to find a cure for FOP while supporting individuals and their families through education, public awareness and advocacy. Our vision is a cure for FOP.Our primary sources of funding come from FOP family fundraising, public contributions, IFOPA special events, and private foundations.Founded in 1988 by Jeannie Peeper, a woman with FOP, the IFOPA was originally established because Ms. Peeper wanted to bring people with FOP together. Today, the organization has grown to include members across the globe, supports FOP research at the University of Pennsylvania School of Medicine at a rate of approximately $500,000 annually and is a life-support to those who suffer from FOP.To learn more about our "Programs and Services"​ - we have shared it below. As of 2012, our organization has 500 members representing over 50 countries worldwide, with 300 international members (outside the U.S.) with FOP and 150 members with FOP living in the U.S. Thanks to this global community, we have been able to partner with other FOP organizations around the world, including ones established in Argentina, Australia, Brazil, Canada, France, Germany, Italy, the Netherlands, and Sweden.For a snapshot of IFOPA information, our "Facts-In-Brief Sheet"​ has been shared below.