September 17th is a day to honor those affected by Leigh syndrome, including families, caregivers, and advocates. It is a day to promote awareness of the genetic disorder and remember those lost too early to the disease.
AJ, USA
When will Leigh Syndrome Awareness Day be celebrated?
September 17th of each calendar year.
What is Leigh Syndrome Awareness Day?
September 17th is a day to honor those affected or impacted by Leigh Syndrome and to recognize the families, caregivers, therapists, teachers, researchers, clinicians, and those relentlessly advocating on behalf of individuals with this life-limiting disease. It is a day to promote awareness for the genetic disorder and is a day of remembrance for those who we have lost too early as a result of Leigh Syndrome.
How should Leigh Syndrome Awareness Day be celebrated or observed?
September 17th is a day to honor those affected or impacted by Leigh Syndrome and to recognize the families, caregivers, therapists, teachers, researchers, clinicians, and those relentlessly advocating on behalf of individuals with this life-limiting disease. It is a day to promote awareness for the genetic disorder and is a day of remembrance for those who we have lost too early as a result of Leigh Syndrome.
Why was Leigh Syndrome Awareness Day created?
Leigh Syndrome is a rare and severe neurometabolic disorder and one of the most common pediatric mitochondrial diseases, impacting an estimated 1 in 40,000 births. The disease impacts individuals worldwide and symptoms typically start between 2 months and 3 years of age. There are more than 100 genetic mutations that can cause this syndrome. Symptoms may include developmental delay, muscle weakness, motor problems, respiratory issues, cardiac issues, cognitive and behavioral changes, optic atrophy, seizures, gastrointestinal issues, failure to thrive, as well as others.
Who created this day?
This day was created by Cure Mito Foundation in 2024.
Are other organizations participating in Leigh Syndrome Awareness Day?
We encourage all groups supporting this cause to commemorate September 17th by sharing their stories and events. Please tag Cure Mito in your posts and link back to this page to help spread awareness and unify our efforts.
