Dr. Erik Lontok is the Director of Research at the Barth Syndrome Foundation. Responsible for the Foundation’s research grantmaking and contracts, Erik also serves as the scientific ambassador for BSF, facilitating collaborations amongst Barth syndrome researchers and external partners.

He most recently served as the Chief Science Officer of the Lipedema Foundation where he contributed to the Standard of Care for Lipedema in the US guidelines publication, successfully engaged novel researchers, key clinical leaders, and patient advocates to launch the first ever lipedema research program, and helped drive and develop the lipedema patient registry to engage individuals in research participation.

Prior to the Lipedema Foundation, Erik served as a Senior Associate with the Milken Institute, wherein he led philanthropic research efforts in inflammatory bowel disease, leukemia, funding academic research, and lipedema. Alongside NIH, FDA, pharmaceutical, and academic partners, Erik facilitated multi-stakeholder collaborations to advance the regulatory science of hepatitis C virus, human immunodeficiency virus 1, and viral deep sequencing at the Forum for Collaborative Research.

Erik graduated with a PhD in Biochemistry from the University of California, San Francisco, and upon moving to the Maryland area, served as an Adjunct Professor of Biochemistry for the University of Maryland, College Park.

Erik’s passion is to engage, learn, and apply knowledge to advance disease research, with the ultimate goal of effective treatments for affected individuals. Erik is an avid cook, occasional gamer, and considers his time teaching Biochemistry as one of his all-time favorite hobbies. Erik lives in Silver Spring, MD with his wonderful wife, Katherine, and their two boisterous kiddos, Ben (7) and Tess (4).