We’re excited to share some big news — our new paper, Expanding Research and Care for Leigh Syndrome: Efforts of a Patient-Led Advocacy Organization, has just been published in the Journal of Research Involvement and Engagement!

 

This paper tells the story of our journey — from our start in 2018 as Cure SURF1 Foundation, created by a small group of parents determined to make a difference, to our expansion in 2021 into Cure Mito Foundation — a major undertaking, but one we knew was critical to meet the unmet needs and cover gaps we had witnessed firsthand — and to the present day as we continue growing and strengthening the Leigh syndrome community.

 

The paper shares updates on our ongoing research projects, the latest results from the Leigh Syndrome Global Patient Registry and the status of the goals outlined in our 2023 registry paper, as well as advances in data sharing with the Critical Path Institute and our community initiatives.

 

Most importantly, the paper shows what’s possible when a community leads the way. None of this would have happened without the dedication of our families, researchers, and partners who share our vision of progress and hope.

 

We extend our heartfelt thanks to our co-authors and collaborators from leading institutions including Washington University School of Medicine in St. Louis, Icahn School of Medicine at Mount Sinai, University of Cambridge, UMass Chan Medical School, and University of Düsseldorf, among many others. We’re also deeply grateful to our partners at the Critical Path Institute, UT Southwestern Medical Center, Perlara, Transcripta Bio, Unravel Biosciences, Sumptuous Data Sciences, and Sanford CoRDS for their collaboration and ongoing support, and to medical writer Leora Fox for helping bring this paper to life.  

 

We also extend our gratitude to the Chan Zuckerberg Initiative (CZI) for supporting Cure Mito’s growth and sustainability and helping us build a lasting foundation for progress. 

Most of all, we thank our families — the research we fund would not exist without your dedication and fundraising efforts, and your trust, strength, and shared commitment to progress make every achievement possible.  

You can read the full paper HERE.

  

" A mind, once stretched by a new idea, never returns to its original dimensions."

-   Ralph Waldo Emerson   -