On behalf of the Board of Directors of The EHE Foundation, Jenni Kovach, Board President has announced the appointment of Denise Robinson as the new Executive Director for the Foundation. 

Like many people, Denise had not heard of EHE until her friend was diagnosed in 2017 with an aggressive form of the disease. She soon began volunteering to support the Foundation’s aspirations to start a study of EHE. She joined the Board of Directors in 2019 and became the Director of Research in a part-time position in 2021. Since that time, Denise has transitioned from running her own business to giving 100% of her time to EHE. She has been serving as Interim Executive Director since February.

As the Director of Research, she continues to oversee The EHE Foundation’s sponsored research and Research Grants Program. Denise is the Principal Investigator of the EHE Global Patient Registry and serves as the Foundation’s primary liaison with the global EHE research and clinical community. 

Denise has over 20 years of clinical research experience in all phases of clinical trials in numerous rare and life-threatening diseases. Her career has been dedicated to working with patients, clinicians, and industry in drug development. She is an active volunteer in her community and enjoys spending time with her family and their dog, Jordan, gardening and running. 

Jenni Kovach, EHE patient and Board President says, “Denise has been a persistent champion for the Foundation, and provides stability to this organization and guidance to the community. As an EHE patient, I am glad to have her lead our team every day.” 

When asked about this new role, Denise commented, “I am honored to be trusted by the community and the Board to take on this role. I feel an enormous sense of responsibility to advance our mission to find effective treatments and a cure – the most basic need that is vital to every person diagnosed with EHE. I am committed to working tirelessly to advance critical research while providing the information and resources people need to navigate their EHE journey, with the ultimate goal that everyone diagnosed can embrace the motto ‘Just Live’.”