About Leigh Syndrome is here to provide you with an opportunity to connect, learn, find resources, strength and courage to live your best life.
Stay Informed
Will, USA
”Follow your gut as much as possible, pursue what you feel is going on with your child, be respectful and cautious but continue asking questions.
- Jennifer Emerson, USAMom to Malachi and Evangeline, both diagnosed with SURF1 Leigh syndrome
Leigh Syndrome Facts
1 in 40,000
individuals are affected by Leigh Syndrome
2 mo - 3 yrs
age when symptoms typically start, although earlier or later onset is also possible
110+
Genetic mutations in nuclear DNA and mitochondrial DNA can cause this syndrome
Patient Registry
If you or a family member has been diagnosed anywhere in the world with Leigh Syndrome, please enroll in the patient registry to make an important contribution to Leigh Syndrome research.
Support For Patients
You’re not alone in your journey. Navigate the challenges together, find hope, and build unstoppable strength with About Leigh Syndrome by your side.
For Healthcare Professionals
Do you treat a child or an adult with Leigh syndrome? There’s a lot that you can do to help and support your patient and their family.
Will, USA
History of Leigh Syndrome
Leigh syndrome is named after Dr. Denis Leigh, a neuropathologist in London, who first described the condition in 1951. It is characterized by specific brain lesions, which are a unique feature of the condition. These lesions typically appear in the basal ganglia, brainstem, and cerebellum. The affected areas often exhibit bilateral symmetrical necrotic or degenerative changes. These distinctive lesions are one of the key diagnostic markers used in identifying it.
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”Nora's smile gives us so much hope and the ability to believe that we will have the power to change the course of this terrible disease.
- Krisztina Ferencz, RomaniaMom of Nora, 7 years old, diagnosed with ECHS1 Deficiency, Leigh-like Syndrome
The Woleben Family
Will Woleben was born a healthy boy and reached his milestones on time. When his growth began to slow around 1 year old, the Wolebens were told that he would catch up. One day while playing, Will suddenly collapsed.
Treatments and Trials
Treatments for Leigh syndrome are focused on keeping children comfortable and slowing disease progression. There is currently no FDA approved treatments or cure, although research and clinical trials are underway.
Rali, Bulgaria
Millie, USA
What’s Next?
If your loved one has Leigh syndrome there’s a lot that you can do by advocating for your family, staying informed, asking questions, joining a patient registry, and being a part of the community.
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