vhl alliance


Ilene Sussman
Executive Director

Ilene Sussman joined the VHL Alliance (VHLA) 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 13 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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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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Andrea Berkemeier
Director of Engagement and Outreach

Andrea Berkemeier joined the VHL Alliance in Fall 2016. In her role as the Engagement and Outreach Director, Andrea 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.

Andrea’s interest in VHL began at age 12 when she was diagnosed with VHL. This spurred her interest in using medicine as a means of improving the lives of others. As a Stamps Scholar, she pursued her BSE in Biomedical Engineering at the University of Michigan. (Go Blue!)  As she grappled with VHL-related health questions in her own life, she better appreciated the limitations an engineering perspective has in answering questions such as ‘how do we determine when to transition from using aggressive treatments to providing palliative care?’ She explored topics like this more fully as the University of Michigan’s Roger M Jones Fellow, earning her MA in Bioethics & Society from King’s College in London. For her Master’s dissertation, she examined how VHL patients navigate ethical considerations pertaining to family planning.

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Susan Milliken
Office Manager

Susan Milliken joined the VHL Alliance in November of 2010. She manages the office in Boston, receives and logs all donations, and inquiries to info@vhl.org, and is the creative genius behind all our graphics and publications.

Susan previously designed and edited books for the pharmaceutical and biotech industry. She has been the leader of the New England Chapter of the National Adrenal Disease Foundation (NADF) for many years. She was recently elected to the NADF Board of Directors. As a person with Addison’s Disease, she is very familiar with the issues faced by people who have lost their adrenal function and is an active member of Inspire in the NADF and VHL (pheo) discussions.

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