Moyamoya Foundation

Founded in 2018, the Moyamoya Foundation (aka MoyaMoya Foundation Co) is a disease focused 501(c)(3) charitable non-profit foundation.

Our focus is on moyamoya disease which is a rare blood vessel disorder in which the main arteries supplying the brain with blood (the internal carotid arteries and intracranial branches) narrow and tiny collateral vessels (“moyamoya vessels”) develop. Moyamoya patients are at increased risk for stroke among other neurological complications. Currently there is no cure for moyamoya disease and the typical intervention for moyamoya patients is revascularization surgery.

The Moyamoya Foundation has partnered with Sanford Research to host our patient registry through the CoRDS Rare Disease Registry. This robust and secure platform ensures the safe collection and management of data, enabling seamless sharing with researchers. Through this collaboration, we aim to advance research and improve outcomes for Moyamoya patients.

We are a fully volunteer organization consisting of many moyamoya patients, caregivers, and others with personal connections to moyamoya disease. We are managed by a seven-member Board of Directors and our primary funding comes from donations through our website and social media.