The Cure Mito Foundation, a Patient Worthy partner organization, and integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University, are hosting a virtual conference titled “Empower and Inspire: Understanding and Accelerating Research for Leigh Syndrome.” This event will be held on Tuesday, September 20, 2022.

About Leigh Syndrome

Leigh syndrome is a type of neurometabolic disease that impacts the central nervous system. Levels of thiamine triphosphate or often abnormally low or absent altogether. Mutations of the mitochondrial and nuclear DNA have been implicated in Leigh syndrome, and there are a number of different variants that have been linked to different genetic abnormalities. Symptoms often appear after a triggering event like surgery or an infection which places strain on the child’s body. Symptoms include vomiting, diarrhea, difficulty swallowing, muscle weakness, dystonia, and ataxia. Treatment is mostly supportive, but may include succinic acid, thiamine, or sodium citrate. A high fat low carb diet can benefit patients with X linked Leigh syndrome. Few patients survive beyond their teen years; respiratory failure is the most common cause of death. To learn more about Leigh syndrome, click here.

About The Conference

This event is open to patients, their families, industry, and researchers and will focus on the latest research related to Leigh syndrome. Topics such as symptom management, the process of drug development, accelerating research, and caregiver wellness will also be addressed.

The keynote speaker for the event is Vamsi Mootha, MD. To learn more about this event and get signed up to attend, click here.