In 2025, the Schoen Family Charitable Trust was honored to provide a grant to the International (FOP) Association (IFOPA) to support its mission of raising awareness about Fibrodysplasia Ossificans Progressiva (FOP). This funding has helped IFOPA to expand awareness of FOP among healthcare professionals and identify critical gaps in education that can improve diagnosis and care. In the message below, Michelle Davis, Executive Director of IFOPA, shares how this partnership is making a lasting difference for those affected by this rare disease.
Fibrodysplasia ossificans progressiva (FOP) is the only known disease in which one normal organ system—muscle—transforms into another: bone. This abnormal bone growth can begin in infancy and continues throughout a person’s life. Over time, people living with FOP can become encased in a second skeleton, and most require a wheelchair by the age of 30. Although FOP is one of the rarest and most disabling genetic conditions known to medicine, many healthcare providers have never encountered it.
In 2025, funding from the Schoen Family Charitable Trust made it possible for the International FOP Association (IFOPA) to attend two major medical conferences to raise awareness of FOP among healthcare professionals. During the American Academy of Family Physicians Conference, we learned directly from doctors that many were unfamiliar with how to order genetic testing for rare diseases like FOP.
That insight led to an important new opportunity. Early this year, through the University of Pennsylvania Orphan Disease Center’s Genetic Counseling Student Exchange, the IFOPA was paired with a genetic counseling intern to help develop an FOP guide for healthcare providers, including guidance on ordering genetic testing.
Without the Schoen Family’s support, we would not have identified this critical educational gap. Thank you for helping raise awareness of FOP and create a better path to diagnosis and care for individuals and families around the world.
Michelle Davis, Executive Director
Medical conference