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Rubinstein Taybi Syndrome Foundation
Vision Statement
A world where every person with Rubinstein Taybi Syndrome is recognized, supported, and able to thrive - with equitable access to diagnosis, therapies, social inclusion, and innovative research that leads to better outcomes across the lifespan.
Our Mission
The RTS Foundation empowers individuals and families affected by Rubinstein Taybi Syndrome through education, advocacy, research readiness, and compassionate commmunity support. We connect families, clinicians, and scientists to improve quality of life, expand access to care, and accelerate progress for everyone living with RTS.
Core Values
Compassion
We honor every familiy’s journey with respect and empathy.
Collaboration - We partner with families, clinicians, researchers, and rare-disease allies.
Integrity - We steward funds transparently and act with accountability.
Empowerment - We equip families with knowledge, resources, and tools to advocate with confidence.
Innovation - We pursue and support scientific progress and new solutions for RTS.
Get to know us
Robyn Cortese
Dr. Robyn Cortese, PharmD is a pediatric clinical pharmacist at Naval Medical Center San Diego (NMCSD), where she has practiced since 2017. She has been a licensed pharmacist since 2013, with extensive experience in pediatric pharmacotherapy, including epilepsy management, antiseizure medications, medication safety, and adverse effect monitoring. A former U.S. Air Force pharmacist, Dr. Cortese brings a disciplined, patient-centered approach to complex medical care.
Dr. Cortese serves on the Professional Advisory Board of the San Diego Chapter of the National Epilepsy Foundation, working alongside clinicians, advocates, and community partners to advance education, awareness, and access to high-quality epilepsy care. She is deeply committed to translating complex medical information into practical, compassionate guidance for patients, families, and caregivers.
Her professional work is informed by her personal experience as the mother of a child with Rubinstein-Taybi Syndrome and cerebral palsy, giving her a unique dual perspective as both clinician and caregiver. This experience has strengthened her commitment to interdisciplinary collaboration, thoughtful advocacy, and empowering families navigating rare and complex medical conditions.
As a national speaker and educator, Dr. Cortese is recognized for her ability to bridge clinical expertise with lived experience, delivering presentations that are both scientifically rigorous and accessible. Her work emphasizes shared decision-making, emerging therapies, and the importance of supporting the whole family—not just the diagnosis.
Through her clinical practice, advocacy, and leadership, Dr. Cortese is dedicated to improving outcomes and quality of life for children and families affected by epilepsy, rare diseases, and complex medical needs.
If you want to put a one-liner near the photo “I care for children and families by bridging clinical expertise with compassion, clarity, and lived experience.”
Grace Mukasey
Grace Mukasey is the ______ of the Rubinstein-Taybi Syndrome Foundation, where she plays a key role in advancing the organization’s mission to support affected individuals and families while driving research, awareness, and collaboration across the medical and scientific communities.
Grace brings extensive experience in hospitality leadership and operations to her role. She began her career at the Ralph Lauren Corporation and went on to build and lead the private dining program at The Polo Bar, where she spent four years overseeing high-profile events, client relations, and complex logistics before advancing to the role of Service Manager.
During the COVID-19 pandemic, Grace served as House Manager for a high-net-worth principal, overseeing all aspects of household operations. In this role, she orchestrated both social and business events, managed scheduling and staffing, supervised daily operations, and provided comprehensive executive-level support to the principal. Her work required discretion, adaptability, and exceptional organizational skill during an unprecedented period.
Grace’s professional background has equipped her with strengths in program development, stakeholder engagement, and operational excellence—skills she now applies to building community, strengthening partnerships, and advancing the Foundation’s impact.
Outside of her professional work, Grace enjoys running, sailing, skeet shooting and history, and is known for fostering community through hosting gatherings for family and friends, including weekly Shabbat dinners. She was a varsity athlete at the State University of New York at New Paltz, where she developed the discipline and teamwork that continue to inform her professional approach. She and her husband, Marc, are the proud parents of their son, Maverick, whose diagnosis inspires Grace’s dedication to the Rubinstein-Taybi syndrome community.
Jenn Klosterman
Jennifer Klosterman resides in Panama City, Florida, with her family. Jennifer is the mother of two daughters, including a six-year-old daughter who has Type 1 Rubinstein-Taybi syndrome. Following her daughter’s diagnosis, Jennifer became deeply involved in the Rubinstein-Taybi community, working to support families who are newly diagnosed and those navigating the world of disability and complex medical needs.
Jennifer serves in Family Advocacy for the Rubinstein-Taybi Syndrome Foundation, where she helps families find connection, guidance, and support. She works closely with caregivers to connect them with other families, physicians, therapies, and resources that can help their children thrive. Jennifer received her degree in Elementary Education from Florida State University and has taught in both general education and inclusion classrooms. Her passion lies in education, advocacy, and helping families feel informed, supported, and never alone.