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
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.