Board of Directors
FOUNDER
Jana K. Sheets (1974 – 2010)
In her early teens, Jana was shaken with the grim acceptance that she had an extremely rare, life-threatening disease. For more than a decade she searched for information, seeking to talk with medical professionals who knew something – anything! – about her disease. Combing the journals for case-literature in medical libraries for the names of doctors and researchers to learn about her disease and how she could deal with the threat to her life, she found little information and no research. Feeling alone in her burden, and yearning to find and speak to other patients with her orphan disease, Jana made a decision: one day, she would establish a foundation to help others who were given a similar diagnosis deal with the fear of the unknown and abandonment. Though she was not well in her remaining years, with the encouragement of her husband, Eric, her sister Megan, and her parents, in July of 2007, she launched the first foundation “to give hope and find help” for patients around the world with Gorham-Stout disease and lymphangiomatosis (generalized lymphatic anomaly).
Jana was also a Founding Member in a small group of lung transplant recipients at Duke University Medical Center who founded the Lung Transplant Foundation.
BOARD OF DIRECTORS
BOARD MEMBER, EMERITUS
Founding Board Members
Sonia J. Herbert-Brande, RN (1956 – 2008)
Sandra Goldfarb, JD
Jack Kelly, MBA
Scot Wiesner, BS
LGDA Staff