Priscilla Ciccariello was born in Ann Arbor, Michigan on October 27, 1925, the daughter of Mary (Olmsted) Johnson and Oakley Calvin Johnson. In 1946 she married Gerard (Charles) Ciccariello, who died in 1974. They had seven boys; Stephen, Peter, Thomas, Michael, Charles (Bill), Daniel, and John. Stephen and Michael predeceased her: Stephen in 1969 and Michael in 2010. In addition to her sons, she is survived by 11 grandchildren and 12 great-grandchildren.
Priscilla graduated from Queens College with a Master’s Degree in Library Science, and received an advanced degree in Librarianship at Columbia University. She worked at the Port Washington Library for 25 years and as the Head of Reference for ten years until she retired in 1993. She also served as Chair of the Reference and History Section of the American Library Association (ALA).
Priscilla played a pivotal role in the formation of key collaborations in the genetic disorders community worldwide, relating to Marfan syndrome. Marfan syndrome is a genetic medical disorder that played a major role in Priscilla’s life as it affected her husband and multiple members of the family. In an effort to raise awareness and create a support system for those affected by Marfans, Priscilla Ciccariello was one of the founding members of The National Marfan Foundation, and founder (and president ) of the International Federation of Marfan Syndrome Organizations (IFMSO). She founded the Coalition for Heritable Disorders of Connective Tissue (CHDCT) and she served as a member of the National Advisory Council for the National Institute of Arthritis, Musculoskeletal, and Skin Diseases (NIAMS), a position appointed by Donna Shalala, U.S. Secretary of Health and Human Services.
A catalyst and respected member of the planning committee for scientific workshops on Marfan syndrome at The Banbury Center of Cold Spring Harbor, New York, vaulted her to leadership positions within a number of organizations. She served on the Board of Directors for the National Organizations for Rare Disorders (NORD), Council of Regional Genetic Networks, Alliance of Genetic Support Groups, and the National Advisory Board for NIAMS. She was also an appointed member of Congressman Robert J. Mrazek’s Health Advisory Committee.
After moving to Sag Harbor, New York in 1990, Priscilla worked with the Lily Pond Residents Association on the establishment of the Nancy Boyd Willey Park in Sag Harbor, she was on the Board of Directors of the Coalition of Neighborhoods for the Preservation of Sag Harbor (CONPOSH), and was a member of the Sag Harbor Citizens Advisory Council (CAC).
In 2020, she compiled a collection of her mother, Mary O. Johnson’s paintings in a book entitled, “The Spirit of Humanity”, and a collection of her own memories in a book titled, “Looking Backward”.
Priscilla lived to be 97 years old. Her life was her family.
NOTE: A private memorial will be held for the family. Donations in her memory can be made to Marfan.org.
One fine body…