While there are many many worthwhile organizations supporting mitochondrial disease, PALS realized there isn’t one soley dedicated towards supporting organizations who have a clear focus on solving Leigh syndrome.
Currently, PALS has chosen to fundraise Leigh syndrome efforts happening now at the UT Mitochondrial Center of Excellence.
The UT Mitochondrial Center of Excellence is a multidisciplinary team of physicians, along with two nurses, social worker, three research coordinators – including one researcher designated only for Leigh syndrome research -, patient liaison/special programs coordinator, and administrative coordinator that provide care to adult and pediatric patients with neurometabolic and primary mitochondrial diseases. Additionally, the UT Mitochondrial Center of Excellence is leading the worlds only operating Leigh syndrome clinic.
The clinic provides provides comprehensive services to aid in diagnosis and management of neurometabolic and mitochondrial disorders. It consults with patients, their primary care physician or pediatrician, and subspecialists to develop a long term treatment plan that is individually suited to each patient.
It also performs research in the field of neurometabolic and mitochondrial disorders and investigate novel treatment approaches in these devastating diseases. The UT Mitochondrial Center of Excellence operates under the direction of Dr. Mary Kay Koenig, Associate Professor of Pediatrics and Neurology at the University of Texas-Houston Medical School. All patients are seen by Dr. Koenig and other subspecialists on the team, according to their medical concerns. The center hosts weekly multidisciplinary meetings to improve continuity of medical care across subspecialties. Patients are followed inpatient at Memorial Hermann Hospital and outpatient through UT Physicians.
Its mission is to provide cutting edge medical care to individuals affected by neurometabolic and mitochondrial disorders, to perform both clinical and basic science research to provide treatment options for patients with mitochondrial disease, and to educate medical professionals and the community about mitochondrial disease.