Mito Matters

Our Story

Mito Matters was founded by Ava Fauvell at age 14 to raise awareness about mitochondrial diseases.

Ava’s journey into mitochondrial disease awareness began long before Mito Matters was created. She had been friends with a boy affected by Kearns-Sayre syndrome (KSS) since elementary school and spent years volunteering and participating in walks organized by his family’s foundation. Through these experiences, she witnessed both the challenges faced by those with mitochondrial disorders and the overwhelming need for greater awareness—especially among young people.

Despite attending these events, Ava noticed that youth involvement often felt more passive than active. It wasn’t until a freshman-year biology project—where KSS was included as a research option—that she fully grasped just how little mitochondrial diseases were discussed, even in science classrooms. She realized that while many people grow up learning about other medical conditions, mitochondrial diseases, which impact thousands, remained widely overlooked.

Determined to change that, Ava launched Mito Matters with a simple goal: to educate and engage more young people in the conversation. What started with sharing daily “Mito Facts” quickly grew into a movement. She built an audience, deepened connections within the mitochondrial community, and invited her friend with KSS to become Mito Matters’ vice president. The initiative gained traction rapidly, resonating with thousands across the globe.

Today, Mito Matters is a passionate, youth-led 501(c)(3) fiscally sponsored nonprofit based in New York, with remote volunteers worldwide. The organization is dedicated to raising awareness, increasing public engagement, and advocating for more research funding to one day find a cure.

Thank you for your support in helping us make mitochondrial diseases matter.