SCIENTIFIC AND MEDICAL ADVISORS

Saima Kayani,md

Scientific & Medical Advisory Member

Dr. Saima Kayani is a Child Neurologist with additional training in Medical Genetics. Her advanced training helps her better understand the clinical and basic molecular mechanisms of neurogenetic diseases.

Steven Gray,phd

Scientific & Medical Advisory Member

Dr Steven Gray is an Associate Professor in the Department of Pediatrics at the University of Texas Southwestern Medical Center. His major focus is in AAV vector development to develop vectors tailored to serve specific clinical and research applications involving the nervous system. 

Berge Minassian,md

Scientific & Medical Advisory Member

Dr. Minassian is a pediatric neurologist whose clinical specialties are epilepsy, neurodegenerative diseases, and neurogenetic conditions

Dr. Minassian is the Chief of Child Neurology at UT Southwestern and also leads the Neurosciences Center at Children's Health in Dallas, TX. 

Qinglan ling,phd

Scientific & Medical Advisory Member

Dr. Qinglan Ling is a postdoctoral researcher in the laboratory of Dr. Steven Gray at the University of Texas Southwestern Medical Center and has been leading preclinical studies to establish an AAV-based gene therapy strategy for SURF1-related Leigh syndrome.

Volkmar Weissig,scd,phd

Scientific & Medical Advisory Member

Dr. Weissig is a Tenured Professor of Pharmacology and Chair of the Department of Pharmaceutical Sciences and a Professor of Biomedical Sciences at the Midwestern University College of Graduate Studies and Co-director of the Center of Excellence in Translational Cancer Research. He is the President of the World Mitochondria Society.

danielle boyce,mph,dpa(c)

Scientific & Medical Advisory Member

Danielle Boyce is a patient advocate, data scientist, researcher, public speaker, and writer. Her work has appeared in dozens of scientific journals and her children’s book, Charlie’s Teacher, is used in children’s hospitals throughout the country. Danielle’s work in patient advocacy is inspired by her oldest son, Charlie, now 11, who lives with Lennox-Gastaut Syndrome. 

Alessandro Prigione, md, phd

Scientific & Medical Advisory Member

Prof. Alessandro Prigione is a Professor of Pediatric Metabolic Medicine at the University of Düsseldorf, Germany. He has established Prigione group in order develop induced pluripotent stem cells (iPSC)-based approaches for disease modeling and drug discovery of rare incurable neurological and neurodevelopmental disorders affecting mitochondrial metabolism. A specific focus is on Leigh syndrome, which is the most severe mitochondrial disease affecting children.

Joana Matos,phd

Patient Registry Advisor

Dr Joana Matos has been working in the biomedical field for more than 15 years and is also volunteering her expertise to help the Rare Disease community. 

Kevin w. Freiert,MBA

Patient Registry Advisor

After retiring from Pfizer, Kevin started Salem Oaks, an organization that empowers patients to shape the future of medicine by providing educational programs about Drug Discovery and Development.