Board, Staff, Advisors & Families

Cara 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 helped train medical students and residents and 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.

Dr. O’Neill was awarded the international 2020 Patient Advocacy Leader Award by WORLDSymposium for her exceptional thought leadership and contributions. For their work rare disease, Glenn and Cara were awarded the Portraits of Courage Honor by NORD in 2015, as well as being 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.

Lindsey earned her B.A. in political science and philosophy at Villanova University and M.Ed. in Higher Education and Student Affairs from the University of South Carolina. Before joining Cure Sanfilippo Foundation, she served as the Volunteer and e-Learning Manager for Girl Scouts of South Carolina.

Lindsey Shealy joined the Foundation team March 2018 and serves as the Development Associate. In this role, she provides volunteer support, assists in fundraising campaigns, and develops local community relationships. Beyond humbled by the Saving Eliza campaign and every parents’ advocacy on behalf of their children, she is proud to be a part of the fight to find treatment options for Sanfilippo syndrome.

Lindsey also serves on the board of the Environmental Education Association of South Carolina and loves serving as a foster cat-parent for a local animal shelter.

Shelby Leonardi is a legal writing instructor at the University of South Carolina School of Law in Columbia, South Carolina. Prior to beginning her teaching career, Shelby practiced at Nelson Mullins Riley & Scarborough in Columbia. She also served as a law clerk to both a federal district court judge and a federal magistrate judge in the District of South Carolina. Shelby received her B.A. in journalism from Marquette University in 1999 and earned her J.D. from the University of Notre Dame School of Law in 2002.

Shelby’s passion for seeking a cure for Sanfilippo syndrome was ignited in 2013 when Eliza O’Neill was diagnosed with the disease. Shelby witnessed first-hand the effect the devastating news had on Eliza’s family, but also saw how important hope related to research and clinical trials can be for the impacted families. She is proud to be a board member of Cure Sanfilippo Foundation because the organization is supporting ground-breaking research in search of a cure for Sanfilippo syndrome.

Valerie is a psychology and education researcher from Spring, Texas, with a BA and MA in Psychology from Marietta College and a EdD in Higher Educational Administration and Educational Leadership from Sam Houston State University. Her research areas include social influence, social identity, social behavior, and coping strategies. She has presented her research at the national and international levels and her work has been published in several academic journals.

Valerie became a rare disease advocate following the diagnosis of her son Will with Sanfilippo syndrome in 2015. She co-founded “WILLPower,” a Texas awareness and advocacy group working to raise the public profile of Sanfilippo syndrome and the funds to support research. Together, she and her husband, Tim, focus on coordinating local WILLPower events while also prioritizing Will’s care and quality of life to create lasting family memories.

Adam Shaywitz, MD, PhD, received his degrees from Harvard Medical School and trained in adult medicine at Massachusetts General Hospital. He subsequently pursued a fellowship in endocrinology, diabetes, and metabolism jointly at the Beth Israel-Deaconess Medical Center and Joslin Diabetes Center where he concurrently pursued postdoctoral studies in molecular physiology.

Adam is Chief Medical Officer (CMO)-in-Residence at BridgeBio Pharma, where he currently serves as CMO for three subsidiary companies: CoA Therapeutics, Aspa Therapeutics, and Adrenas Therapeutics.

Prior to BridgeBio, he spent five years at BioMarin Pharmaceutical as an Executive Director in the Clinical Sciences group. While at BioMarin, Adam developed, designed and led natural history and clinical studies for Sanfilippo syndrome. Additionally, he played a key role in developing a number of programs aimed at treating a broad range of diseases, including other lysosomal storage disorders. During his tenure at BioMarin, Adam also worked closely with the research and business development teams to develop and broaden the pre-clinical and clinical pipeline.