The EHE Foundation’s Advisory (Ad) Board met with the Foundation’s research team in June for their annual meeting. The Ad Board is composed of nine renowned clinicians and researchers who generously give their time and talents to advise The Foundation, in addition to the countless hours they spend during their ‘day jobs’ with patients, research projects, and reports. Members include Dr. Silvia Stacchiotti, Dr. Scott Okuno, Dr. Denise Adams, Dr. Vinod Ravi, Dr. Brian Rubin, Dr. Breelyn Wilky, Dr. Cameron Trenor, Dr. Jonathan Trent, and Dr. Bill Tap.
Denise Robinson, EHE Foundation Director of Research, chaired the meeting which included the Ad Board and the Foundation’s research committee members. The agenda focused on reviewing Foundation’s growth and strategic planning, the patient-led research initiatives of highest priority including the EHE Biobank and EHE Global Patient Registry (in development). Additionally, the group discussed other strategic projects including a prospective observational study, and the 2022 Research Grants Program. Significant time was spent discussing the importance of the biobank and registry participation among EHE patients, which are critical to learning more about EHE biology, potential treatments, and patients’ experiences.
Denise commented that “this meeting of these great minds is essential to keeping the Foundation focused on moving our mission forward and grounded in our pursuit of better treatments and a cure for EHE. We are eternally grateful for the time and talents the Ad Board gives to the EHE community. They are awesome champions of our mission!” Jenni Kovach, President of The EHE Foundation and also an EHE patient, attended the meeting and was thrilled to welcome everyone while reiterating “we need you…as a patient, and the Foundation needs you and we are so thankful that you choose to be here today.”
To learn more about The EHE Foundation’s Advisory Board, click here.