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.  

“While Shwachman-Diamond Syndrome has a lot of fundamental research in place, I found some significant gaps that stand in the way of research development. The reason I got into it, my most important job, is being the mother of a patient with SDS.”

Eszter Hars, Ph.D., is President and CEO of the Shwachman-Diamond Syndrome Alliance, a nonprofit she founded in 2020 to drive therapy development for Shwachman-Diamond Syndrome (SDS), a leukemia predisposition disorder that affects her young daughter. As part of her capstone, Hars aimed to launch a patient data entry platform with the objectives of:

• Mobilize, unite, and energize the SDS patient community

• Support clinical trial and therapy development

• Match patients to the right clinical trials

With these objectives in mind, Hars identified a data collection platform that was user-friendly, , developed validated and structured data elements to support research and therapy development, and focused on marketing and communications to encourage patient engagement. The Schwachman-Diamond Syndrome Alliance is now prepared to enroll patients in a pilot study to expand the learnings from the pilot study to the entire SDS community.