Joyce’s late husband Frank had von Hippel-Lindau disease which made him blind from VHL at age 20. Through college she served as his primary reader and volunteer coordinator, organizing reading materials for a full load of coursework at Cornell University and later at the University of Michigan. He graduated from Cornell, and earned Master’s and Ph.D. degrees from the University of Michigan in history, and taught American Diplomatic History at Boston College.
In addition to her husbands academic career and VHL, Frank also underwent fifteen rounds of major surgery in fourteen years. He passed away in 1977.
Joyce and her husband had considerable experience with discrimination in blindness, academic admissions, genetics, and insurance.
In 1979 Joyce had breast cancer, which was successfully treated surgically, with a right radical mastectomy.
In 1986 their son Damon was diagnosed with VHL. Thrown back into active duty with VHL, Joyce ploughed into the literature and applied her research and analytic skills to the task.
In 1993, along with two other mothers, she founded the VHL Family Alliance, which now serves more than 16,000 affected people in 108 countries via phone, paper, and internet.