Board of Directors

FOUNDER

JKSPhoto - Copy

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).


 

BOARD OF DIRECTORS

Jack Kelly
President
Florida
About Jack
Scot Wiesner
Chairman
Wisconsin
About Scot
Tiffany Ferry
Director
Georgia
About Tiffany
Allan Gammon
Director
New Zealand
About Gammie
Scott Goldfarb
Director
Michigan
About Scott
Mitch Maersch
Director
Wisconsin
About Mitch
Tracy Milne
Director
Scotland
About Tracy

 

Founding Board Members

Sonia J. Herbert-Brande, RN (1956 – 2008)
Sandra Goldfarb, JD
Jack Kelly, MBA
Scot Wiesner, BS

 


 

Director of Patient Programs

Lisa Klepper, BSN, RN
Director of Patient Programs & Patient Registry Coordinator
About Lisa