TISSUE DONATION IS CRITICAL TO FIND TREATMENTS! Click here to learn more.
Meet our Team
Denise Robinson
Interim Executive Director & Director of Research
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 and 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 served on The EHE Foundation’s Board of Directors and volunteered on several working committees. 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.
Contact Denise
Contact Denise
Maggie Cameron
Director of Development & Communications
Maggie is an EHE patient who joined The EHE Foundation as the first full-time Director of Development & Communications. 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 familiar 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.
Contact Maggie
Contact Maggie
Julie Wahl
Board Member Emeritus & Finance Manager
Julie is a founding Board Member of The EHE Foundation, established in 2015. EHE had affected her family and she was feeling helpless in the fight. She quickly realized that in order to move this cause forward, she and others needed to come together. At that point, the Foundation was formed and the Board assembled.
Julie is a veteran of the US Army and has a BA in Accounting. She brings to the Foundation experience in education, financial management, and tax preparation. Julie's family has recently retired from the military and she dedicates herself full-time to The EHE Foundation. Her ability to interact and support diverse people and cultures and her compassion and adaptability have been instrumental in the Foundation’s success.
Julie also supports the foundation in the area of fundraising and patient services. She focuses on national fundraisers and supporting grassroots events. She plays an integral role in communicating with donors, patients, and caregivers including current EHE information and Foundation updates.
Patty Cogswell
EHE Biobank, Principal Investigator
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.
Contact Patty
