Tammy has dedicated her career to helping small organizations grow and brings her passion for building sustainable organizations to The EHE Foundation as Executive Director. With over twenty-five years of experience guiding organizations through periods of transformational change, Tammy has developed expertise in finance, fundraising, grant writing, marketing, human resources, event planning, IT, and management. As Executive Director, Tammy manages the operations of the organization, executing on the strategy developed by the Board of Directors, and leads fundraising efforts. Prior to joining The EHE Foundation, Tammy spent more than twelve years at the Chordoma Foundation, a leading, patient-led, rare sarcoma organization. With extensive personal and professional experience with rare diseases, Tammy is familiar with the challenges facing patients, caregivers, and loved ones when dealing with an EHE diagnosis.
Denise was introduced to the EHE community in 2018 after a friend’s short battle with EHE. She has 20 years of clinical research experience, including Phase I-IV clinical trials in many diseases, including numerous rare and life-threatening diseases. Her career has been dedicated to working with pharmaceutical companies, patients and doctors to advance critical research. As the Director of Research, Denise oversees the operations of all EHE Foundation-sponsored research, the EHE research grants program, she is the Principal Investigator of the EHE Global Patient Registry and serves as a liaison with the global EHE research and clinical community.
Denise serves on The EHE Foundation’s Board of Directors as well as volunteering on several working committees of the foundation. She brings a breadth of skills and passion which have translated from commercial drug development and now are focused on finding treatments and a cure for EHE.
Patty has a B.S. and M.S. in Microbiology and Immunology from the University of Rochester. Her career in cancer research spans 25 years, during which time she authored more than 30 research publications. For the majority of her career, she served as a research scientist and lab manager at the University of North Carolina at Chapel Hill Lineberger Cancer Center. Patty joined the rare cancer field in 2012, when she became manager of research for the Chordoma Foundation. In that role, she developed the Foundation’s biobank, cell line, and animal model repositories. In 2019, Patty founded Rare Biorepository Consulting LLC to help rare cancer foundations advance their research initiatives through specimen donation. She is excited to lead the EHE Biobank sharing her experience and knowledge, with the ultimate goal of finding a cure for EHE.
Maggie is an EHE survivor and manages The EHE Foundation website, email platform and social media accounts. She's been with the Foundation since it's founding, building and maintaining the website and advising on technical subjects. Along with her part-time work for The EHE Foundation, she is the full-time Communications Manager for the Desmoid Tumor Research Foundation (DTRF). Working with DTRF allows her to bring experience and best practices in rare disease communication to The EHE Foundation.
Diagnosed in 2011 with EHE found in the liver and lungs, she has undergone a liver resection and multiple tumor ablations. Living just south of Pittsburgh, PA, she has been lucky to find doctors that have familiarity with EHE at UPMC and Hillman Cancer Center. With a 'watch and wait' approach, Maggie is able to live an active life. When she is not working at her computer, she enjoys spending time with her two grown children and hiking with her dog.