Betty Jane Henry died at her home in Wellington, Florida, on Sunday, September 5, at the age of 93. She and her husband, Bob, co-founded the National Hemophilia Foundation (NHF) in 1948. Their son, Lee, was born in 1941 but was not diagnosed with hemophilia until he experienced an abdominal bleed 14 months later.
The Henrys started NHF to provide resources and support to other families dealing with the disorder. Initially, the foundation was run out of Bob’s law office in Manhattan. To raise money for the fledgling foundation and its research wing, they held the Fall Frolics, a series of fundraisers that included dancing at the St. Regis Hotel in New York City. In 1954, they gathered the first group of physicians, forming the Medical and Scientific Advisory Council (MASAC), which would make recommendations on treatment and other issues for people with bleeding disorders.
Betty Jane was born July 31, 1917, in New York. She was an accomplished equestrian, having competed in jumping contests at age 13 and then progressing to gaited horse events. She met her future husband, Robert Lee Henry, at a horse show on Long Island. Betty Jane also competed in the National Horse Show before becoming a licensed judge at 19. In 1996, the organization honored her as a “living legend.” The Henrys helped establish the United States Equestrian Team.
A few years ago, Betty Jane picked up a new hobby, dancing. She performed in a dance show in 2009, when she was 92 years old.
Betty Jane was preceded in death by her husband, Bob, and her son, Lee, who died in 1963 at age 21 from complications of a bleed. She is survived by her brother, Fred Ferguson, a niece, a nephew, a grand-niece and two grand-nephews.
In lieu of flowers, donations can be made to the National Hemophilia Foundation, 116 West 32nd Street, 11th Floor, New York, NY, 10001 or to the National Horse Show Association, P.O. Box 386, Greenvale, NY, 11548. A memorial service was held in Wellington, Florida, with interment in the family plot in Cold Spring Harbor, New York.