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.
Maggie is an EHE survivor who recently joined The EHE Foundation as the full-time Communications & Development Manager. She's been with the Foundation since its founding, building and maintaining the website, advising on technical subjects, and planning social media. She spent 2023 working full-time as the Communications Manager for the Desmoid Tumor Research Foundation (DTRF), another rare disease patient advocacy group. Her work with the DTRF allows her to bring best practices in rare disease communication back 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 who have familiarity with EHE at UPMC and Hillman Cancer Center. With a 'watch and wait' approach, Maggie can 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.
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.