It is with great sadness that we share the news that Joan Engel, former president of the National Neurofibromatosis Foundation (NNFF), has passed away. Joan served as president of the NNFF from 1981-1984, after Foundation founder Lynne Courtemanche, who started our organization in 1978 with Allan Rubenstein, MD and Joel Hirschtritt. Joan’s involvement with the Foundation came because of her son Ken, who lives with NF, and her incomparable leadership in those critical early days of the organization ensured that the vital work of funding NF research and developing the NF community would continue and thrive. Her accomplishments still resonate today, as the Foundation commemorates its 40th year.
Joan touched many lives with her kind spirit and distinctive grace, her vibrant energy and thoughtful compassion. She is also remembered for her wonderful sense of humor and her steadfast optimism. Earlier this year, in recognition of the Foundation’s anniversary, Joan shared with NF News a remembrance about the Foundation’s founding, discussed the role the organization plays in the lives of NF patients and families, and reflected on the pride she feels for her son Ken, who currently serves on the Foundation’s national Board of Directors. That interview can be read here.
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| Joan Engel and her son Ken Rudd |
We were also fortunate that Joan was able to join the Foundation this past April at its 40th anniversary kickoff celebration in New York, where she inspired the next generation of NF fighters – patients, families, volunteers, and staff alike – with her vision of a future of better lives for all who live with NF.
We will greatly miss Joan and send our deepest condolences to her family and friends.
