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The On-Air Advocate

Dec 28, 2020

As we continue to support and drive awareness for World Sanfilippo Awareness Day, I am so excited to welcome to the show, Dr. Cara O'Neill, Chief Science Officer & Co-Founder of
Cure Sanfilippo Foundation.
Dr. Cara O'Neill completed her medical education at West Virginia University School of Medicine and subsequently her Pediatric Residency training at the University of South Carolina. She has worked both in private practice and academic settings. During her tenure as an Assistant Professor of Clinical Pediatrics at the University of South Carolina, she practiced in a clinic specific to children with special healthcare needs. These uniquely-paired career and life experiences allow her to bridge gaps between scientists, clinicians, industry, and families, helping foster patient-centered research and translational paths forward for rare disease treatments.She and her husband founded Cure Sanfilippo Foundation after receiving her daughter’s diagnosis in 2013. Since then, they have spread awareness around the globe about Sanfilippo Syndrome via talk shows, news media, online platforms, and international newspapers.
As Chief Science Officer, Cara leads the Foundation’s patient-focused research efforts and has presented at international conferences and authored peer-reviewed journal articles. In addition, she collaborates with other non-profit groups on mutual advocacy and research interests, as well as oversees the foundation’s funding of external scientific programs.Cara was awarded the international 2020 Patient Advocacy Leader Award by WorldSymposium for her exceptional thought leadership and contributions. Glenn and Cara were awarded the Portraits of Courage Honor by the National Organization of Rare Disorders in 2015, as well as a Tribute to Champions of Hope finalist for Global Genes. In 2017, they received the South Carolina Child Advocate Award from the SC American Academy of Pediatrics.
Listen in as Dr. O'Neill shares their family’s personal journey with Sanfilippo Syndrome, key signs parents should watch for, the Mission of the Cure Sanfilippo Foundation and how you can get involved and help spread awareness.