The TSC Alliance announces the retirement of Chief Scientific Officer Steven L. Roberds, PhD, at the end of December 2026. In preparation for this transition, effective January 1, 2026, Dean J. Aguiar, PhD, will be promoted to Executive Vice President, Translational Research, and subsequently to Chief Scientific Officer in January 2027.
During his 15 years with the TSC Alliance, Steve has built a comprehensive research platform designed to accelerate the development of new treatments for tuberous sclerosis complex (TSC). Steve was instrumental in conceiving and executing a robust research business plan that has transformed how we work and interact with all stakeholders—individuals and families living with TSC, academic researchers, healthcare providers and industry. This plan helped improve our ability to raise funds from donors and to increase revenue by working with the biotech and pharmaceutical industry. Before Steve joined the organization, there were 11 employees and an annual budget of $3.5 million. Today, we have grown to 24 employees and become a $10 million organization.
The TSC Alliance’s ability to truly catalyze research, which serves as the foundation of the plan, is due to collaborative programs that Steve created or fostered. Working with TSC Clinics, he led the launch of a Biosample Repository which now hosts more than 3,000 biospecimens from individuals with TSC and is linked to our Natural History Database to enable researchers to better understand why TSC is so different from person to person, with a goal of leading to more personalized treatments. He served on the leadership team of the TSC Clinical Research Consortium which has carried out several clinical studies, including the first clinical trial for preventing epilepsy in the United States.
Steve also led the establishment of the TSC Preclinical Consortium, which tests potential new treatments in TSC-relevant mouse models. This consortium was designed to make it attractive and easy for biotech and pharmaceutical companies to rapidly test novel drugs or genetic therapies in robust and reproducible animal models of the disease. So far, more than two dozen companies have participated in the consortium. Three of these companies have begun, or will soon initiate, clinical trials for TSC, and the consortium continues to build a robust pipeline of new therapies for the future. Steve’s legacy of driving research toward a cure for—and with—the TSC community will continue for generations.
Because of his impact at the TSC Alliance and his collaborative nature, Steve has become recognized as a leader in the rare disease space. From 2016 to 2020, Steve served on the advisory council for the National Institute of Neurological Disorders and Stroke at the National Institutes of Health. He also was a member of the planning committee for the Curing the Epilepsies Conference, a presenter at workshops and a mentor of organizations in the Rare as One program, and a founding steering committee member for the Rare Epilepsies Network. He has not only changed the lives of those with TSC, but he has impacted many others with rare diseases who look to the TSC Alliance as a model for how advocacy organizations can drive research on behalf of their communities.
The TSC Alliance will be honoring Steve and his wife Mary, who has volunteered for the organization in many ways, at the 2026 TSC World Conference in Aurora, Colorado, during the Blue Night Dinner on Saturday, August 1. Learn more and register for the conference at tscalliance.org/worldconference.
Please join us in congratulating Steve on his career and the incredible impact he has had on TSC research. On behalf of all of us, we thank him for his dedication to improving the lives of all affected by TSC.