The International Rett Syndrome Foundation (IRSF), the leading nonprofit organization dedicated to accelerating research and empowering families affected by Rett syndrome, is proud to announce Laura Hameed as its new Chief Executive Officer. A nationally recognized leader in rare disease and nonprofit innovation and growth, Hameed brings extensive experience leading mission-driven organizations, building high-impact partnerships, and expanding access to life-changing treatments.
“I’m humbled and energized to join IRSF and lead this extraordinary organization into its next chapter,” said Hameed. “The Rett community is courageous, resilient, and deeply deserving of progress. Together—with researchers, industry, families, and advocates—we have an opportunity to accelerate hope and turn possibility into reality.”
Hameed most recently served as Executive Director of CureDuchenne, overseeing transformative organizational initiatives, developing strategy for an Impact Investment Fund, and strengthening relationships with families, industry leaders, and regulators alike. Her career spans executive roles in nonprofit gene therapy and biotech startups, where she helped advance multiple ultra-rare disease programs from research through clinical trial readiness. She also brings a background in public service—including serving in the Minnesota House of Representatives and as a University of Minnesota Regent.
“We knew from the outset that finding the right leader for this next chapter would be critical,” said David Pass, PharmD, Chair of the IRSF Board of Directors. “Laura brings a proven track record of empowering families and advancing therapies from the lab to the clinic. Her unique blend of scientific insight, policy experience, and deep compassion makes her exceptionally well-suited to lead IRSF forward. The Board is incredibly excited about what lies ahead.”
The national search was led by IRSF’s Board of Directors in partnership with the executive search firm Gilman Partners. Board Member and Interim CEO Leslie Mehta guided the organization during the leadership transition and shared her excitement for what lies ahead.
“As a mother to a child who lived with Rett syndrome and as someone deeply committed to this community, it’s been an honor to help lead IRSF during this time,” said Mehta. “Laura brings the right mix of vision, compassion, and proven experience. I’m incredibly hopeful about what we will accomplish together, and proud to pass the baton to someone who clearly shares our passion and purpose.”
Hameed will oversee IRSF’s full scope of work—from advancing cutting-edge fundamental research and therapeutic and curative treatments to championing advocacy initiatives and ensuring families have the resources, support, and connections they need. Her leadership will help drive progress across the Rett syndrome landscape, both in the U.S. and around the world.
Hameed officially began her tenure as CEO on April 14, 2025. She will be based out of San Antonio, Texas, with plans for regular travel to connect with families and partners nationwide.
About Laura Hameed
Laura Hameed is a seasoned executive with a deep commitment to families impacted by rare diseases. With more than 20 years of cross-sector leadership in nonprofit organizations, biotech, higher education, and government, she brings to IRSF a rare blend of mission-driven passion, strategic vision, and operational excellence.
Throughout her career, Laura has built and led organizations at the forefront of medical innovation and community empowerment. Most recently, she served as Executive Director of CureDuchenne, overseeing operations, board engagement, fundraising, and strategic planning for the internationally recognized nonprofit. Under her leadership, the organization transformed its development strategy to drive sustainable growth, implemented organizational process improvements, and developed an Impact Investment Fund. She led a dynamic team responsible for delivering high-impact fundraising events, family education programs, and a national summit that united regulators, advocates, and industry leaders.
Previously, Laura served as the founding Executive Director of CCF, a nonprofit gene therapy initiative. She helped accelerate and clear hurdles to therapeutic development for ultra-rare, mutation-based neurological disorders like SPG50 and AADC deficiency—conditions similar to Rett syndrome in their genetic origin. Earlier in her career, she led GeneSegues Therapeutics and RoverMed BioSciences and was a co-founder of Elpida Therapeutics, which is focused on bringing innovative gene and cell therapies to rare disease communities. Across these roles, Laura has championed scientific progress while keeping the needs of patient communities at the forefront.
A dynamic communicator and connector, Laura is known for her ability to build relationships across families, clinicians, donors, researchers, and industry. She is equally committed to fostering strong organizational cultures—empowering teams, mentoring talent, and creating the conditions for sustainable growth.
Laura previously held elected office in the Minnesota House of Representatives, where she led on healthcare policy, and served as a Regent of the University of Minnesota system. She holds degrees from the University of Minnesota and Minnesota State University, Mankato, and is an Aspen Rodel Fellow in Public Leadership.
A native Minnesotan and mother of six, Laura now splits her time between Minnesota and San Antonio, Texas, with her husband and their two dogs. She is proud to lead IRSF into its next chapter—focused on accelerating treatments, strengthening community, and empowering every family living with Rett syndrome.