CureMITO

Wishing all who celebrate a joyful Easter filled with hope and renewal. 💙

To those who are celebrating, wishing you a meaningful Passover. May this season of freedom bring strength, hope, and light. 💙

Westin, a four-year-old living with SURF1 Leigh syndrome, shows what strength truly looks like - facing every challenge with resilience, joy, and a heart full of love. 💙 Read Westin’s story: curemito.org/stories-westin/

Meet Verity, a sweet, motherly little girl who loves music, dancing, and wearing pretty dresses. She also happens to have a SURF-1 gene mutation that causes Leigh syndrome. To read more about Verity's story, visit curemito.org/veritys-story 💚

Meet Grace! Her mom Andrea says, “She’s taught me resilience, gratitude, and how to be a good mom. Her name's Grace, and she's literally my saving grace, my amazing grace.” To read Gracie's story, visit curemito.org/graces-story 💚

What are the first signs families notice? This word cloud highlights some of the earliest concerns reported by families in our registry. Add your voice to the registry—your participation matters.

Enrolling in the Leigh Syndrome Patient Registry is easy! Visit our updated registry page for step-by-step, downloadable instructions: curemito.org/leighsyndromer…

Meet Elena, a cheerful little girl despite her devastating diagnosis of Leigh syndrome. Read her story at curemito.org/elenas-story Conoce a Elena, una pequeña alegre a pesar de su devastador diagnóstico de síndrome de Leigh. Lee su historia en curemito.org/elenas-story

Today is #RareDiseaseDay. Built by families. Guided by science. We ensure the Leigh syndrome community has a seat at the table. CureMito.org

Our newest Leigh syndrome hero story is here! Meet Elsie, a two-and-a-half-year-old earth angel who radiates pure love and joy. Read her story at curemito.org/elsies-story 💚

Children with Leigh syndrome often need a tracheostomy because the condition can make breathing more difficult and the airway less stable. A trach is a small tube placed in the windpipe that helps them breathe more easily, stay safe, and get the oxygen they need.

Data from the Leigh Syndrome Global Patient Registry show substantial caregiver burden — frequent stress and daily strain — alongside clear resilience. This #RareDiseaseMonth, help ensure these experiences inform research. Join: curemito.org/leighsyndromer… #LeighSyndrome

We carry a lot of responsibilities as medical parents, many of them behind the scenes. We’d choose it all again and again for our children 🩺🫶🏼👊🏼

We carry a lot of responsibilities as medial parents, many being behind the scenes. We’d choose it all again & again for our children 🩺🫶🏼👊🏼

🦓 "Think horses, not zebras," but in rare diseases, zebras are real. This Rare Disease Month, learn about Leigh syndrome, help us spread awareness and raise funds: curemito.org #leighsyndrome #mitochondrialdisease

New blog post 📣 We’re sharing our full journey with SURF1 gene therapy—from the very beginning to where we are today. Huge thanks to our scientific collaborator Dr. Leora Fox for writing it. 🔗 tinyurl.com/surf1-research

Today, we remember Bradlee. She was such a bright light that her parents were regularly stopped in public by people in awe of her beauty. She loved purple, her mermaid pants, and more than anything else, her older brothers. Read more about her story at curemito.org/bradlees-story

Spread some love with our new Valentine’s merch 💚 Available in sizes for adults and children, these designs celebrate everyone in the mito community and the love that surrounds them. #curemito #mitochondrialdisease #mitodisease

Today we honor sweet Wally, who will always be deeply loved and brought so much joy to everyone he met. We’re holding his family close and grieving with the many people whose lives he touched. We will keep fighting for a cure and better treatments in Wally’s memory. 💚