Robbie Baker

The Phelan-McDermid Syndrome Foundation (PMSF) is pleased to announce the appointment of Robbie Baker as its Chief Executive Officer, following the successful conclusion of a comprehensive national search.

In this role, Robbie will provide strategic vision and executive leadership to the foundation, serving as PMSF’s principal representative to stakeholders, partners, and the broader community. He will oversee all organizational functions, including development, program strategy, community engagement, and the cultivation of partnerships within the scientific and medical communities to advance research. He will also guide the foundation’s advocacy initiatives on behalf of individuals and families affected by Phelan-McDermid syndrome.

Through this leadership, Robbie will play a pivotal role in advancing PMSF’s mission to enhance the quality of life for those living with this rare genetic disorder.

Robbie brings three decades of experience in c-suite and senior leadership roles across patient advocacy and nonprofit organizations. Most recently, he served as Chief Growth Officer for the National Alopecia Areata Foundation (NAAF), where he directed fundraising, marketing, communications, and advocacy efforts that led to a doubling of organizational revenue, the establishment of NAAF’s full-time presence in Washington, D.C., and significantly expanded global awareness of alopecia areata. His earlier professional experience includes leadership positions with the National Multiple Sclerosis Society, the Leukemia & Lymphoma Society, and the Brain Injury Association of America. Robbie holds a bachelor’s degree from Wofford College and a master’s degree from the University of South Carolina.

The Phelan-McDermid Syndrome Foundation is the leading organization dedicated to improving the lives of individuals and families affected by Phelan-McDermid syndrome, a rare genetic disorder that impacts brain development, physical health, and daily functioning.