About MEPAN Foundation

MEPAN Foundation was organized in 2018 and established as a tax-exempt 501(c)(3) corporation in 2019 to increase awareness of MEPAN Syndrome and fund research that benefits MEPAN patients and others with similar rare diseases.  Patients with MEPAN, PKAN, CoPAN and CMAMMA could all benefit from more coordinated efforts that combine expertise from researchers studying mitochondrial disease, acidurias, neurodegeneration with brain iron accumulation, and lipoic acid defects. 

The Team

Scientific Advisors

Danny Miller

Founder and CEO

 Danny established the MEPAN Foundation after his sons were diagnosed with MEPAN Syndrome in early 2017 and learning that there were no proven treatments that could help them. Using research and communication skills honed over his nearly 20 year career in public relations and marketing, Danny has begun laying the groundwork for an organization that aims to broaden the knowledge and understanding of MEPAN Syndrome and find treatments that will improve the quality of life for MEPAN patients and others suffering from rare disease. 

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Bryce Mendelsohn, MD, PhD

Dr. Mendelsohn is a Medical Geneticist who is also a pediatrician and molecular biologist. He specializes in biochemical and mitochondrial disorders and diagnosed one of the 17 known MEPAN patients. Bryce also follows population genomics and the role of genetic screening in the future of health care. His experience and training includes a postdoctoral fellowship, a residency in Medical Genetics and two years as an Assistant Clinical Professor at the University of California San Francisco.

 

Laura Fuqua, MS, CGC

Laura Fuqua is a board certified and licensed genetic counselor. She has clinical, diagnostic testing laboratory, clinical research, and variant interpretation experience in the clinical genomics ecosystem; she is especially invested in rare conditions utilizing the levers of genomic data sharing, collaborations, and supporting families. She currently at ClinVar ensuring public access to clinical genomic data. Previously she held roles in diagnostic testing laboratories (Genzyme Genetics, LabCorp, Lineagen, and Invitae) and clinical settings. She is an alumna of Brandeis University and the University of California Santa Cruz.  

 

©2018 by MEPAN.org.

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MEPAN Foundation is a 501(c)(3) non-profit organization. Your gift is tax-deductible

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