The Champ Foundation receives $450,000 grant

February 03, 2020

The Champ Foundation is thrilled to announce the Chan Zuckerberg Initiative (CZI) has awarded a $450,000 grant to develop and launch a collaborative Pearson Syndrome Research Network.

This grant is part of CZI’s Rare As One Project, aimed at supporting and lifting up the work patient communities are doing to accelerate research and drive progress in the fight against rare diseases.

“We are proud to support patient-led organizations as they pursue diagnoses, information, and treatment options in partnership with researchers and clinicians,” said Priscilla Chan, Co-Founder & Co-CEO of CZI.

With help from Dr. Sumit Parikh (Cleveland Clinic) as the Primary Physician and Dr. Suneet Agarwal (Boston Children’s Hospital) as the Primary Researcher, the two-year grant will formalize The Champ Foundation’s collaboration with world-class clinicians and researchers, steer the field to investigate high-potential pathways, and exponentially accelerate our progress toward treatment and a cure for Pearson Syndrome.

President and co-founder of The Champ Foundation, Jeff Reynolds said, “For families facing this disease, the CZI Rare As One grant represents a transformative opportunity to radically change the outlook for children fighting Pearson Syndrome by leveraging patient expertise and conviction to inspire more research and enhance scientific collaboration.”

Vice President and co-founder Elizabeth Reynolds added, “One thing we are most excited about the Rare As One Network is the ability to learn from and collaborate with like-minded, dedicated patient advocate groups for rare diseases. We also hope The Champ Foundation can serve as a model to others. Ultra-rare diseases need advocates. Focused advocacy and dedicated funding can quickly change the trajectory of rare disease research.”

About The Champ Foundation

The Champ Foundation was founded in 2015 and is a patient-led organization with a mission to support research toward better treatment and a cure for Pearson Syndrome. Pearson Syndrome is a multi-system disease caused by a deletion in mitochondrial DNA, often fatal in infancy. The Champ Foundation has awarded over $650,000 in grants to researchers and scientists, including support for preclinical research used for a FDA sanctioned clinical trial for Pearson Syndrome. For more information, please visit

About the Chan Zuckerberg Initiative

Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit