Carol was diagnosed with Fibrodysplasia ossificans progressiva (FOP) as a child and spent her life advocating for more research in search of a cure for this rare disease. When Carol passed away in 2018, she donated her skeleton to the Mütter Museum so that she could continue to educate the world about FOP. We spoke to Carol’s doctor and FOP experts to honor her memory and learn more about FOP.
April 23 is also FOP Awareness Day, which celebrates the day that the FOP gene, ACVR1, was discovered. 2021 marks the 15th anniversary of the announcement of the gene discovery!