"A United States-based non-profit foundation, the Usher 1F Collaborative received a $450,000 grant from the “Rare as One” project launched by the Chan Zuckerberg Initiative (CZI). The CZI was established in 2015 by Facebook CEO Mark Zuckerberg and his wife, Dr. Priscilla Chan."
Newton Neighbors, May 2020, Charity Spotlight
A foundation researching the syndrome, which predominantly affects Ashkenazi Jews, gets grant from Facebook's Mark Zuckerberg
Read about the Chaikof family and their efforts to bring about a cure for Usher 1F.