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About This Project

This project is inspired by our belief that:

Patients are people

Our Leigh Syndrome community deserves an engaging and user-friendly website

Knowledge and information should be accessible to all

Emma, USA

Never forgotten, Maren, Canada

And because we know that:

The clock is ticking

We have to act with urgency

And also because:

We Care

We are Committed

We Believe

We worked on this project:

  • For the entire Leigh Syndrome community
  • With the Leigh Syndrome community
  • Transparently
  • Inclusively
  • Openly

Jaxson, USA

We thank the following authors and contributors:

Kasey Woleben

Cure Mito Foundation

Rare Village Foundation

Sophia Zilber

Cure Mito Foundation

Courtney Boggs

Cure Mito Foundation

Shamima Rahman, FRCP, FRCPCH, PhD

Great Ormond Street Institute of Child Health

Ibrahim Elsharkawi, MD

Icahn School of Medicine at Mt. Sinai

Breanna Lima Martinez

Student, University of Pennsylvania

​Melinda J. Burnworth, PharmD, BCPS, FASHP, FAzPA

Midwestern University College of Pharmacy

Titilola M. Afolabi, PharmD, BCPPS

Midwestern University College of Pharmacy, Phoenix Children’s Hospital

Peter McGuire, MD

National Institutes of Health (NIH)

Krisztina Ferencz


Faye Wylie

Leigh Network

Rachel Kramer, PhD

Psychologist, private practice

John Novack

Novack Consulting Services

Siobhan Climer

Taproot Report

Diana Luz Juárez-Flores, MD

Nikolay Nikolaev