People Against Leigh Syndrome, (PALS), was formed in 2013 after William Martin, son of Neil and Lori Martin, was diagnosed with Leigh syndrome, a genetic neurometobolic disorder that can cause deterioration of the central nervous system, including the brain, spinal cord, and optic nerve.
After discovering the disease was progressive and potentially fatal, supporters of the Martin Family decided to take action and through PALS has built awareness of this unknown disease and raised funds to support the medical community in their quest to develop viable treatments and ultimately a cure.
To date, PALS has raised nearly $500,000 to support projects like TRiaLS: The International Registry for Leigh syndrome, a highly-secure database managed by the UTHealth Mitochondrial Center of Excellence that enables qualified researchers and clinicians to connect with patients for International Review Board (IRB) approved research projects and clinical trials.
Additionally, PALS has partnered with four of the world’s leading mitochondrial disease patient advocacy groups to form and fund an international Leigh Syndrome Research Network. PALS along with U.S. based United Mitochondrial Disease Foundation (UMDF), Australian based Mito Foundation, The Lily Foundation of the U.K., and Mitocon of Italy, have pledged $1 million USD to support this innovative, multi-year project to fund research with a focus on improving diagnosis, therapeutic development and optimized patient care for Leigh’s patients.