Phelan-McDermid Syndrome Foundation Names Robbie Baker as Chief Executive Officer
by: Denise Croden, President, Phelan-McDermid Syndrome Foundation
We are excited to share an important milestone for the Phelan McDermid Syndrome Foundation (PMSF). After a comprehensive national search, we are thrilled to welcome Robbie Baker as our new Chief Executive Officer. Robbie will officially join PMSF full-time in mid-January.
Robbie is a seasoned nonprofit executive and successful fundraiser with more than 30 years of leadership experience across patient advocacy organizations. In his most recent role as Chief Growth Officer for the National Alopecia Areata Foundation (NAAF), Robbie helped transform the organization by doubling its revenue, establishing a full-time presence in Washington, D.C., and significantly expanding global awareness of alopecia areata.
Robbie’s career includes senior leadership roles with several respected national organizations, including the Brain Injury Association of America, No Barriers USA, the Make-A-Wish Foundation of Ohio, Kentucky & Indiana, the Leukemia & Lymphoma Society, the National Multiple Sclerosis Society, and the American College of Rheumatology. Across these roles, he has demonstrated a strong commitment to partnership-building, community engagement, and strategic growth.
A Leader Who Shares Our Values
Robbie’s experience stood out not only for his accomplishments, but for his passion for patient advocacy and his alignment with PMSF’s mission and values. We are beyond thrilled to welcome Robbie as our new CEO. His proven ability to scale organizations, secure major gifts, and lead diverse teams will be invaluable as we work to expand our reach and deliver critical support to the Phelan-McDermid syndrome community.
Interim CEO and Chief Operating Officer Diane Linnehan stated, “It became clear during our search that Robbie is the leader we were seeking. His accomplishments and experience stand on their own, and he brings the shared values and integrity that will carry us into our future. Our staff is energized and ready to welcome him, and I am eager for our community to meet him.”
Looking Ahead
Robbie joins PMSF at a pivotal time. With potential new therapies moving into human trials, the Phelan-McDermid syndrome community is entering an era of unprecedented possibility and forward momentum.
“I am honored and excited to lead the Phelan-McDermid Syndrome Foundation,” Robbie said. “PMSF plays a vital role in the lives of individuals and families affected by this rare disorder. There has never been more hope for what’s possible. I look forward to partnering with our staff, volunteers, and families to build on the tremendous momentum already underway.”
Robbie holds a Master of Education (M.Ed.) from the University of South Carolina and a Bachelor of Arts (B.A.) from Wofford College.
About PMSF
The Phelan McDermid Syndrome Foundation is the leading national nonprofit organization dedicated to improving the quality of life for people affected by Phelan-McDermid syndrome worldwide. We support families, provide advocacy and resources, and accelerate research toward treatments and a cure for this rare genetic neurodevelopmental disorder.