Team Noah - ECHS1

Noah's Story

At 4 years old, our sweet Noah was diagnosed with ECHS1 Deficiency, a rare genetic metabolic disorder that affects her mitochondria. There are many ways that this disease impacts her now and can continue to progress in the future- right now there is no treatment or cure, just symptom management.

However, there is current research for gene therapy specifically for ECHS1 being done at UT Southwestern, and drug repurposing trials for mitochondrial disease. We hope to fund this extremely important research to find a cure for Noah and all of the children who have been diagnosed with this disease. Every donation and share are helping to give our girl, and many other kiddos, a better chance at a long, beautiful life.

Thank you for your help- it means more than we can say!

Fund Details

We, as families of children with rare diseases, take on roles as advocates, educators, and pioneers in research. We organize fundraisers, raise awareness, and collaborate closely with scientists to advance understanding and treatment. Our determination not only fuels our efforts but also inspires communities far and wide to join us in supporting research initiatives, all driven by the shared hope for breakthroughs that will change lives.

Families from around the world are partnering with Cure Mito Foundation to raise funds that get us closer to a treatment or cure for our children.