Established in 2020, the FasterCures LeadersLink Program is a capacity-building program to support the personal development of an emerging cadre of leaders of nonprofit organizations that fund or conduct biomedical research. LeadersLink focuses on building participants’ leadership skills and professional network and addressing their top priorities through mentorship, a capstone project, a series of convenings, virtual collaboration, and access to Milken Institute events and networks.  

“Our mission is to improve the lives of everyone living with Myhre syndrome. Therefore, when it came to our capstone project, we wanted to identify patient data resources that addressed and reversed the knowledge inequity amongst our international patient community.”

Kate Wears became President of the Myhre Syndrome Foundation in 2021 after joining the board in 2020. As part of her capstone project, Wears aimed to develop multi-language patient resources, update the current Myhre syndrome patient registry data measures, and allow for multi-language medical record integration. Wears has partnered with the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) to achieve these goals. Now, the international Myhre syndrome community has access to data and information that was previously out of reach.