The International Rett Syndrome Foundation (IRSF) today announced that Melissa Kennedy, who served as Chief Executive Officer since 2017, stepped down from her role at the end of 2024.
“It has been the honor of a lifetime to serve the Rett syndrome community,” shared Melissa. “We’ve built a strong foundation—expanding our board, team, data, research and clinical network, and national reputation—to ensure the sustainability of IRSF’s mission well into the future. I leave with a full heart, deeply grateful for the shared bond we’ve cultivated and the incredible progress we’ve achieved together.”
During her seven years as CEO, Melissa guided IRSF through a period of growth and progress, expanding its global impact and strengthening its mission to accelerate research and empower families. Under her leadership, IRSF established a 21-strong Center of Excellence clinic network, fostered partnerships with biopharmaceutical companies to drive clinical trials, and advocated at state and federal levels for increased Rett syndrome research funding and accessible treatments.
“Melissa’s vision and leadership have transformed IRSF and brought new hope to the Rett community,” said David Pass, IRSF’s Board Chair. “As we prepare for this transition, we remain steadfast in our mission to accelerate research and empower families. I have full confidence in our dedicated team to carry forward the momentum Melissa has built.”
Leslie Mehta, Esq. Appointed Interim CEO
The Board of Directors has appointed Leslie Mehta as interim CEO, effective January 1, 2025. Leslie brings more than 20 years of legal and advocacy experience, along with a deeply personal connection to Rett syndrome. Leslie has practiced as an attorney for over 20 years, handling civil and disability rights cases, which led to becoming the legal director of the ACLU of Virginia. But when her oldest daughter, Brooke, was diagnosed with Rett Syndrome around the age of 2 years old in 2017, Leslie chose to step down to focus more time on Brooke’s care and her rare disease advocacy work.
Leslie launched the website prettybrooke.com, which earned her a nomination for the disAbility Law Center of Virginia’s advocacy award in 2021. She was appointed to Virginia Gov. Glenn Youngkin’s Rare Disease Council in 2023 and recently ran for Congress in Virginia’s first district in 2024, where rare disease and disability advocacy were central aspects of her platform.
After Brooke’s diagnosis, Leslie also began volunteering with the International Rett Syndrome Foundation, assisting with IRSF’s lobbying efforts for Rett research funding, joining the board of directors in 2021 and the board’s executive committee as Board Secretary in 2023. While Brooke passed away in 2021, Mehta’s commitment to the Rett community continues to inspire her work.
“I am honored to step into the role of interim CEO and to lead IRSF during this important time,” said Mehta. “As a mother who has walked this journey, I am deeply committed to the Rett community and to ensuring that we continue advancing research, providing exceptional resources, and supporting families. Together, we will build on the strong foundation Melissa has left and move closer to the breakthroughs we all hope for.”
IRSF remains steadfast in its mission, with plans for 2025 including the announcement of new research grants, convening leading scientists at its annual scientific meeting, and hosting the RettAway family vacation in July. The organization has engaged the national search firm Gilman Partners to identify a permanent CEO, with updates to follow as the search progresses.