About PALS

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.

Update from the Martins

People Against Leigh Syndrome (PALS) was created after our son, Will Martin, was diagnosed with Leigh syndrome at the age of 2. Our intent was to spread awareness of Leigh syndrome, fund research efforts and support TRiaLS: The International Registry for Leigh Syndrome. We are so incredibly appreciative of our friends, family and strangers who have volunteered their time and talent and financial contributions. We could not have done this without you. 

Most notably, we are proud of our partnership in the Leigh Syndrome International Consortium with the United Mitochondrial Disease Foundation, The Lilly Foundation (Europe) Mito Foundation (Australia) and MitoCon (Italy) https://leighsyndrome.org/. This collaborative group created an international focus on Leigh syndrome and is actively funding the first and only global Natural History Study of Leigh syndrome. Its purpose is to rapidly build a valuable research data set to facilitate clinical trials on Leigh syndrome. This study also will build infrastructure to collect, analyze and share data future international collaboration. 

At the beginning of 2024, we made the collective decision to step back to a more passive fundraising role so that we can better support our family.  The PALS website, as well as donations, will now be under the direct oversight of UTHealth Houston, another 501(c)3 organization. We are leaving several elements of our page intact, including registration for TRiaLS: The International Registry for Leigh Syndrome and the donations page, which will benefit Leigh syndrome research at UTHealth, under the direction of Dr. Mary Kay Koenig. 

We hope that you will continue to support Leigh syndrome by supporting UTHealth and TRiaLS as well as the United Mitochondrial Disease Foundation (UMDF) and MitoAction. 

With warm regards, 

Lori & Neil Martin