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 fund research that will improve the quality of life for patients with MEPAN and related disorders. We also work to raise awareness for rare diseases, genetic testing, and using precision medicine to change the way patients are treated for rare genetic conditions, which affect 1 in 10 people worldwide.

Research Network

Michael Burkart, PhD

University of California San Diego

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Susan Hayflick, MD, PhD

Oregon Health & Science University

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Peter Kropp, PhD

National Institute of Health

Ralph DeBerardinis, MD PhD

UT Southwestern Medical Center

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Gali Heimer, MD, PhD

Sheba Medical Center

Bryce Mendelsohn, MD, PhD

Kaiser Permanente Oakland

Laura Fuqua, MS, GCG

Blueprint Genetics

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Alex Kastaniotis, PhD

University of Oulu

Ethan Perlstein, PhD

CEO, Perlara PBC

Join Us!

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