vhl alliance


Ilene Sussman
Executive Director

Ilene Sussman joined the VHL Alliance in the Fall of 2011. The VHL Alliance is a non-profit organization dedicated to research, education, and support to improve diagnosis, treatment, and quality of life for those affected by von Hippel-Lindau Syndrome. In her role as Executive Director, Dr. Sussman is responsible for directing VHLA’s quest for a cure while continuing to support patient advocacy and education.

As a doctorate in Biochemistry, Dr. Sussman is keenly aware of the involvement of the VHL gene in many other forms of cancer.  As such, finding a cure for von Hippel-Lindau is one step closer to finding a cure for cancer.

Dr. Sussman’s previous professional experience includes serving as the Executive Director of the North American Thrombosis Forum (NATF) in Boston, MA. While at NATF, Ilene was responsible for expanding awareness, leading advocacy efforts on Capitol Hill, and expanding educational programs. Prior to her tenure at NATF, Ilene spent seven years working for the Boston Jewish community including positions at Combined Jewish Philanthropies and as the Founding Executive Director of DAF: Jewish Day School Advocacy Forum.

In addition to her 17 year tenure in the not-for-profit sector, Ilene utilized her biochemistry background in the pharmaceutical industry at Genzyme Corporation and OraVax as well as at Boston University Medical Center where she served as Research Assistant Professor of Medicine. Ilene earned her PhD in Biochemistry from The Weizmann Institute of Science in Israel, along with a MS in Biochemistry and a BA in Biology from the University of Pennsylvania.

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Diamond Tarwoe
Office Manager

The VHL Alliance welcomes Diamond Tarwoe as our new Office Manager! She brings over 3 years of managerial and administrative experience, working in the health industry. Diamond joined the VHL Alliance in late September of 2017. Her duties include serving the VHL constituency as well as communicating with staff and board members about the needs of the community. Her enthusiasm and ambitions contribute to her efforts to make a difference in today’s society.

Diamond was born in Abidjan, Ivory Coast. She moved to the United States with her family when she was two-years-old. Diamond holds a bachelor’s degree in Political Science and is currently pursuing her master’s in Public Administration at the University of Massachusetts Lowell. In her free time, Diamond enjoys being a coach for her school’s step team, eating, reading, listening to music, and spending quality time with her family and friends.

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Heidi Leone
Director of Advancement

Heidi A. Leone joined the VHL Alliance team during the summer of 2015, as Director of Advancement. Her lifelong passion to fight against cancer and her diverse fundraising skills make her uniquely suited for the mission of VHLA. She has worked in non-profits for 20 years, specializing most recently in annual giving and major gifts. Her background with national non-profit organizations, such as the American Cancer Society, and her varied responsibilities with independent schools, faith-based organizations, and children have prepared her to lead in a variety of settings and fundraising venues.

Heidi brings along with her enthusiasm, passion and generosity of self in her career as well as her private life. She spends as much time as possible with family, friends, and her Jack Russell Terrier. Her other interests include cooking, tennis, gardening, reading, and taking long walks with her dog.

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Josh Mann
Director of Engagement and Outreach

Josh joined the VHL Alliance in May of 2017. In his role as the Director of Engagement and Outreach, Josh provides patient support, works with VHL Clinical Care Centers, and serves as the team leader of the VHLA Cancer in our Genes International Patient Databank project.

Josh earned his Masters of Public Health degree in Health Care Policy and Management at New York Medical College. He has devoted his career to improving the patient experience through a variety of endeavors including entrepreneurial pursuits, nonprofit work and collaborating with leaders in the field. In his free time, Josh enjoys cooking with his fiancé, playing with his puppy and spending time outdoors.

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