We are proud to announce the recipients of the American Porphyria Foundation President’s Award 2020. The President’s award is a time-honored tradition for the APF to honor members and partners who have gone above and beyond to support the foundation or our members, and who have served to increase awareness of porphyria. Congratulations to our 2020 awardees: MICHAEL BOONE, CRAIG LEPPERT, JORDANNA MORA and BRUCE WANG, MD.
MICHAEL BOONE was diagnosed with Acute Intermittent Porphyria (AIP) in 2002 after a yearlong battle with attacks. Ever since, he has been a both personally involved and a strong proponent for participation in porphyria research as well as being a patient voice for the APF - via his social media and Membership Advisory Board contributions.
CRAIG LEPPERT was diagnosed with Erythropoietic Protoporphyria (EPP) at a young age and grew a love for overcoming the sun to do anything and everything outside. That love inspired Craig to partner with the APF to launch Shadow Jumpers – a program to support and encourage children to overcome the sun to do anything they want.
JORDANNA MORA, MS, LCGC, MBA serves as Director, Patient Advocacy and Engagement, Medical Affairs at Alnylam Pharmaceuticals. Connecting her scientific background in genetics along with her communication and marketing skills, she has passionately advocated for the APF and the porphyria community over the last several years.
BRUCE WANG, MD is a dedicated Porphyria Expert located at UCSF. He has served as the face of the Porphyrias Consortium (PC) on APF videos, Facebook Live sessions, Q&A responses, at a Patient Education Meeting or in the media talking about Porphyria. He always says yes to APF requests! Dr. Wang conducts his extensive studies of the porphyrias in the Wang Lab at the University of California San Francisco.