Organization Spotlight: The Cure Mito Foundation
About the Foundation
The Cure Mito Foundation was founded as a Cure SURF1 Foundation in 2018 by a group of families with children diagnosed with SURF1 Leigh syndrome. Although they had been told by doctors that there is no treatment or cure for this rare disease, these families were determined to fight for their children’s lives.
In 2021, after successfully leading the way for SURF1 gene therapy at UT Southwestern Medical Center, the foundation decided to expand their efforts. AS a result, they changed the name of their foundation from the Cure SURF1 Foundation to the Cure Mito Foundation.
The foundation’s primary focus is advancing research towards a cure for Leigh syndrome and, eventually, for mitochondrial disease as a whole. A successful outcome will mean not only hope for their own children but also life-saving treatments for future generations impacted by this disease.
Mission Statement
The Cure Mito Foundation’s mission is to unite the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures.
Contact Information
Phone number: 646-483-7073
Email address: info@curemito.org
Homepage: https://www.curemito.org/
Learn More
Cure Mito is pleased to share two registry resources that they have developed with a working group. You can learn more about the working group and download this PDF: Best Data Practices for Rare Disease Patient Foundations and Researchers - WORKING GROUPS - PHUSE Advance Hub;
If you like to be a speaker at Cure Mito’s virtual conference, please fill out this form;
Cure Mito is creating a database of doctors of all specialties who treat Leigh syndrome patients. To share a doctor who has treated Leigh syndrome patients, please click here;
Cure Mito and the Orphan Disease Center created a short video: Frequently Asked Questions about Registries. Together, Cure Mito and UPenn Orphan Disease Center created a survey that was sent out to many patient groups to identify gaps in how patient groups use registries and work with data. To view the video, click here;
Resources
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