Board, Staff, Advisors & Families

Glenn is the father of Eliza O’Neill, who was diagnosed in 2013 with Sanfilippo syndrome (MPS III). He and his wife Cara co-founded the 501c3 non-profit Cure Sanfilippo Foundation with a mission to advocate and fund research for treatments or a cure for all Sanfilippo syndrome children.

Since its creation, the Foundation has grown to include more than 90 families of children with Sanfilippo syndrome. This team approach has raised more than $10 million and generated assets of more than $15 million to support the mission and helped fund more than 20 grants around the world so far.

Glenn has spoken in various forums and conferences including NORD (National Organization of Rare Disorders), Rare Genomics Institute, PRIMR Advancing Ethical Research, Sanofi Genzyme, GoFundMe Headquarters, Molina Healthcare, and others. Glenn was the 2017 Sanofi Genzyme Torch Award winner and received the 2017 GoFundMe Trailblazer award. 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.

Despite having a child with a devastating regressive and terminal brain disease, Glenn’s believes the Cure Sanfilippo mission will be achieved through kindness, humility, transparency, vulnerability, inspiration, and determination, and has found collaboration with like-minded people and organizations is the key to success.

Katie graduated from Miami University (Ohio) with a B.A. in Zoology and a Minor in Business Management. She spent 16 years in the credit union industry, which believes in empowering people through affordable and accessible financial services. Several years were spent serving as an executive for the state trade association, directing the organization’s marketing, communications, public relations, membership engagement, and annual membership campaign; providing strategic planning and execution; leading the organization’s 501(c)3 as Executive Director; and collaborating on governmental and regulatory advocacy initiatives.

Captivated by the story of Eliza’s family in 2014, Katie has been supporting the Foundation and all its families ever since. She served on the Foundation Board from May 2015 to February 2019, upon which she joined as a member of the Foundation staff. Supporting the families fighting to cure Sanfilippo has become a passion for her family.

She graduated from Winthrop University in South Carolina with a B.S. in Special Education and worked for several years as a special education teacher in the public school system, specializing in teaching students with profound intellectual and physical disabilities. She worked closely with related services (PT, OT, Speech, Vision, ABA, Nursing, etc.), classroom staff, and families to meet the individual academic and functional needs of each student.

She left teaching in 2023 to focus full time on finishing her Master’s degree in Learning Experience Design and Educational Technology, to enhance her expertise in defining the unique needs of individual students and develop custom and creative learning solutions for them that include the full spectrum of educational ages (kindergarten to adulthood). She received her Master’s degree from Western Governors University in November 2023.

Kassidie has personal “lived experience” with Sanfilippo and developed a passion for all children with the disease during her years spent as a part-time caregiver for Eliza O’Neill, a child with Sanfilippo Syndrome Type A. She was Eliza’s caregiver for several years, during school summer breaks when she was teaching and up through completion of her Master’s.

Dan received his undergraduate degree in accounting from LaSalle University and a graduate of Villanova’s School of Law with a Masters in Taxation.

Dan has more than 20 years of experience and has been VP of Taxation at RenRe since 2015. Prior to that, he was Director in the Tax Practice of PricewaterhouseCoopers in Philadelphia. He also spent 11 years in industry, serving as a Tax Director. Prior to his time in industry, Dan spent almost three years at Coopers and Lybrand serving domestic and multinational corporate clients.

Dan has extensive experience in accounting for income taxes, due diligence reviews, corporate tax planning and restructuring, international tax planning, tax compliance and state and local tax planning, which he applies in his role on the Foundation board. Dan has been a guest speaker at various tax forums sponsored by PricewaterhouseCoopers and the Pennsylvania Institute of Certified Public Accountants.

Faith received her B.A. in History with a Secondary Education Certification in 2005 and Masters of Education in 2007 at the University of North Carolina, Wilmington. She taught high school for several years and currently oversees the business end of Blue Sky Tree Care. She keeps the books; handles bills, taxes, and insurance; and works with the accountant. Additionally, she provides support to her husband’s small business.

Her youngest daughter is only 16 days younger than Eliza, so the “Saving Eliza” story hit very close to home. Since then, she has provided support to the Foundation in multiple areas, including public relations, business management, and fundraising development.

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.

Mike became involved with Cure Sanfilippo Foundation after his granddaughter’s diagnosis in June of 2023. Having witnessed the immense challenges that his granddaughter and family face on a daily basis, he reached out to the Foundation to inquire “how he could help.” Since then, he has assisted in helping to spread awareness, raise critical funding, and assist on legislative efforts for the foundation.