The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) recently announced Marilyn Hair received the Jeannie Peeper Presidential Lifetime Leadership Award for her contributions to those in the rare disease community that have fibrodysplasia ossificans progressiva (FOP). Hair is a staff member in the University of Washington School of Public Health where she manages outreach for the Interdisciplinary Center for Exposures, Diseases, Genomics and Environment in the Department of Environmental and Occupational Health Sciences.
Hair’s daughter, Sarah Steele, was three months old in 1985 when she was diagnosed with fibrodysplasia ossificans progressive, a debilitating disorder that causes bone to form in muscles, tendons, ligaments and other connective tissues.
Hair currently serves on IFOPA’s International President’s Council. She served on the IFOPA Board of Directors from 1994-2006 and 2011-15. At different times, she chaired committees, serving as secretary, vice chair and board chair. She conducted workshops at FOP symposia and co-authored with her daughter the children’s book, What is FOP? Questions and Answers for the Children.
Hair is most proud of the FOP children’s book and of helping establish the L.I.F.E. Committee and Quality of L.I.F.E. Award, a scholarship that provides equipment and training to improve independence for people with FOP. She is also proud of having served as board chair.
“At the beginning of our FOP journey, we were told that FOP is so rare, nobody was interested in studying it,” Hair said. “Now the gene has been identified and many pharmaceutical and biotech groups are involved in drug development for FOP. Seeing meaningful treatments on the horizon gives me hope."
She added: “I hope that in addition to finding clinical care, families will join the IFOPA and connect to the FOP community. Meeting others with FOP was the best thing that happened to our family. We have found comfort, strength and hope in the FOP community.”