About Us

Danny and Nikki Miller established the MEPAN Foundation after their sons Carson and Chase were diagnosed with MEPAN Syndrome in 2018 and learning that there were no treatments that could help them. It was granted tax-exempt 501(c)(3) status in the U.S. in 2019.


Our mission is to advance collaborative research that will improve the quality of life for people with MEPAN and related disorders. We also advocate for the increased use of genetic testing to diagnose and precision medicine to treat rare genetic conditions, which affect 1 in 10 people worldwide.

Research Network


Daphne Atlas, PhD

Hebrew University

Laura Fuqua, MS, GCG

Blueprint Genetics

Alexa Kastaniotis, PhD

Alex Kastaniotis, PhD

University of Oulu

Bryce Mendelsohn, MD, PhD

Kaiser Permanente Oakland

Michael Burkart, PhD

University of California San Diego

Susan Hayflick, MD PhD

Susan Hayflick, MD, PhD

Oregon Health & Science University

Peter Kropp, PhD

Peter Kropp, PhD

National Institute of Health

Ethan Perlstein, PhD

CEO, Perlara PBC

Ralph DeBerardinis, MD, PhD

UT Southwestern Medical Center

Gali Heimer, MD, PhD

Gali Heimer, MD, PhD

Sheba Medical Center


Melis Demir Köse, MD PhD

İzmir Katip Çelebi University 


Valeria Tiranti, MD, PhD

Carlo Besta Neurological Institute

Join Us!

Nothing can be accomplished without collaboration. Please consider donating time, money or resources to help improve the quality of life for people with MEPAN and create more awareness for rare conditions that affect millions of people worldwide. Send us a message to see how you can help!