Board of Directors
GRACE Network for Rare Disease
Board of Directors
The GRACE Network for Rare Disease is governed by a multidisciplinary Board of Directors whose combined experience spans medicine, nonprofit leadership, business development, finance, communications, and family advocacy. Together, the Board is committed to advancing research, supporting families, fostering collaboration, and ensuring that no family faces a rare disease diagnosis alone.
President and Chair
Dr. Séan Henderson is a physician, rare disease advocate, and father of a child living with infantile onset SPG4, As President and Chair, he provides the strategic vision and leadership for the organization, guiding its mission to support families affected by rare disease while advancing research, collaboration, and innovation. His professional experience in medicine, healthcare administration, and systems development helps bridge the gap between clinical care, research, and family needs.
Treasurer
Mr. Norman Froelich brings decades of experience in software and hardware support, including a long and successful career with Eli Lilly and Company. His background in complex systems, operational management, and organizational accountability provides valuable oversight of the foundation’s financial and administrative functions.
Secretary
Ms. Lisa A. Lara is an accomplished business leader with extensive experience managing and operating a large and complex construction organization. Her expertise in business operations, organizational management, project coordination, and executive leadership provides a practical perspective to board governance, She contributes thoughtful and independent feedback that helps ensure sound organizational decision making
Director
Dr. Astrid H. Heger is Professor of Clinical Pediatrics at the Keck School of Medicine of USC and founder of the Violence Intervention Program (VIP) at Los Angeles County USC Medical Center. Over a distinguished career spanning more than four decades, she has become nationally recognized for developing innovative systems that support vulnerable children and families through integrated medical, psychological, legal, and community services.
Director
Ms. Alexis Lara is a public relations and communications professional with experience in branding, presentation development, strategic messaging, and public engagement. Her expertise in communication strategy, audience development, and organizational storytelling will help ensure that the mission and work of the GRACE Network are presented clearly, professionally, and effectively to families, donors, partners, and the public.
President and Chair
Dr. Séan Henderson is a physician, rare disease advocate, and father of a child living with infantile onset SPG4, As President and Chair, he provides the strategic vision and leadership for the organization, guiding its mission to support families affected by rare disease while advancing research, collaboration, and innovation. His professional experience in medicine, healthcare administration, and systems development helps bridge the gap between clinical care, research, and family needs.
Treasurer
Mr. Norman Froelich brings decades of experience in software and hardware support, including a long and successful career with Eli Lilly and Company. His background in complex systems, operational management, and organizational accountability provides valuable oversight of the foundation’s financial and administrative functions.
Secretary
Ms. Lisa Lara is an accomplished business leader with extensive experience managing and operating a large and complex construction organization. Her expertise in business operations, organizational management, project coordination, and executive leadership provides a practical perspective to board governance, She contributes thoughtful and independent feedback that helps ensure sound organizational decision making
Director
Dr. Astrid H. Heger is Professor of Clinical Pediatrics at the Keck School of Medicine of USC and founder of the Violence Intervention Program (VIP) at Los Angeles County USC Medical Center. Over a distinguished career spanning more than four decades, she has become nationally recognized for developing innovative systems that support vulnerable children and families through integrated medical, psychological, legal, and community services.
Director
Ms. Alexis Lara is a public relations and communications professional with experience in branding, presentation development, strategic messaging, and public engagement. Her expertise in communication strategy, audience development, and organizational storytelling will help ensure that the mission and work of the GRACE Network are presented clearly, professionally, and effectively to families, donors, partners, and the public.
Our Leadership Philosophy
The GRACE Network for Rare Disease was intentionally founded with a Board whose members are builders, innovators, and leaders from diverse professional backgrounds. Their collective experience spans healthcare, nonprofit leadership, business ownership, finance, technology, and communications.
This multidisciplinary approach reflects our belief that solving the challenges of rare disease requires more than scientific discovery alone. It requires responsible governance, financial stewardship, operational excellence, meaningful partnerships, and unwavering compassion for the families we serve.
Together, the Board of Directors is committed to advancing research, strengthening collaboration, supporting newly diagnosed families, and building a future where no family must navigate a rare disease diagnosis alone.