{"id":3085,"date":"2024-07-22T13:50:29","date_gmt":"2024-07-22T17:50:29","guid":{"rendered":"https:\/\/www.med.unc.edu\/pediatrics\/muenzer-mps-center\/?page_id=3085"},"modified":"2025-02-27T15:16:23","modified_gmt":"2025-02-27T20:16:23","slug":"patient-advisory-council","status":"publish","type":"page","link":"https:\/\/www.med.unc.edu\/pediatrics\/muenzer-mps-center\/about-us\/patient-advisory-council\/","title":{"rendered":"Patient Advisory Council"},"content":{"rendered":"

The Muenzer MPS Center has established an advisory council that brings together perspectives from parents and experts within the MPS communities to enhance our collaboration with nonprofit organizations and families impacted by MPS. This council helps identify promising research opportunities and explores ways to support both children and adults living with MPS. Through this inclusive approach, we aim to develop comprehensive strategies to strengthen our initiatives across all key areas including clinical care, advocacy, research, and education (CARE) for the MPS community.<\/span>\u00a0<\/span><\/p>\n

Council Members<\/span><\/p>\n

\"\"
Mark Dant<\/strong>
Executive Director<\/strong>
Ryan Foundation, Inc<\/strong>.<\/figcaption><\/figure>\n

Mark Dant is the founder and Volunteer Executive Director of the Ryan Foundation. He is also the former Board Chair of the EveryLife Foundation for Rare Diseases and former President and CEO of the National MPS Society. Mark established the Ryan Foundation in 1992 after his son, Ryan, was diagnosed with MPS I. Since then, the foundation has funded millions in research and provided the critical funding that led to the development of Aldurazyme, the first and to date only drug FDA approved to treat MPS I.<\/p>\n

Mark\u2019s family\u2019s journey has been featured on CBS 60 Minutes<\/em>, The Today Show<\/em>, CNN<\/em>, Biography Magazine<\/em>, Golf Digest<\/em>, and numerous global news outlets. A dedicated advocate, Mark has spoken before the FDA and successfully championed the passage of the Ryan Dant Health Care Opportunity Act in 2009. After a 32-year career in law enforcement, retiring as Assistant Chief of Police with the Carrollton, Texas Police Department in 2016, Mark now dedicates his time to rare disease advocacy, empowering families to find hope through action.<\/p>\n

 <\/p>\n

\"\"
Kristin McKay
President and Executive Director Project Alive<\/strong><\/figcaption><\/figure>\n

Kristin McKay is a well-known and lifelong member of the Hunter syndrome community. Her late brother, Zachary, gave her the drive to spread awareness about MPS II from a young age. The diagnosis of her son, Charlie, just three years after the passing of her brother kickstarted her passion for fighting for a cure.<\/p>\n

Kristin has seen Hunter syndrome through much of its medical development, with her brother receiving ERT after 10 long years of a lack of available treatment, to her son receiving a stem cell transplant at four months old.<\/p>\n

Kristin has served on the Board of Project Alive since January 2020. She has worked on several committees including Marketing, the Hunter Syndrome Community Conference Planning, and Fundraising. Kristin served as Project Alive\u2019s Secretary prior to accepting her position as Executive Director. Since joining the staff in 2022, Kristin has jumped headfirst into advocacy and program development at Project Alive.<\/p>\n

 <\/p>\n

\"\"
Cara O’Neill, MD, FAAP Chief Science Officer & Co-Founder<\/strong>
Cure Sanfilippo Foundation<\/strong><\/figcaption><\/figure>\n

Cara O’Neill, MD, completed her medical education at West Virginia University and pediatric residency at the University of South Carolina. She has worked in both private practice and academic settings, training medical students and residents while caring for children with special healthcare needs.<\/p>\n

She and her husband founded the Cure Sanfilippo Foundation in 2013 after their daughter was diagnosed with MPS III. Since then, they have globally raised awareness of Sanfilippo syndrome through talk shows, news media, online platforms, and international publications. As Chief Science Officer, Cara leads the Foundation\u2019s patient-focused research efforts and has presented at international conferences, authored peer-reviewed journal articles, and received multiple awards, including the 2020 WORLDSymposium Patient Advocacy Leader Award.<\/span><\/p>\n

 <\/p>\n

\"\"
Bobby Vice<\/strong>
Co-Founder and Co-President<\/strong>
A Cure For Robert, Inc.<\/strong><\/figcaption><\/figure>\n

Bobby Vice is the proud father of Robert and Anna and the Co-Founder and Co-President of A Cure for Robert, Inc. Following Robert\u2019s MPS IV (Morquio syndrome) diagnosis in 2008, Bobby became dedicated to advancing research and awareness. A graduate of the University of North Carolina \u2013 Chapel Hill with honors and the University of Kentucky College of Law, he worked for a decade at a large regional law firm before co-founding Vice Cox & Townsend in 2015. With extensive nonprofit board experience, Bobby is passionate about Rooting for Robert\u2019s mission and hopeful for the impact it can achieve.<\/p>\n

 <\/p>\n

 <\/p>\n

\"\"
Helen Vice<\/strong>
Co-Founder and Co-President<\/strong>
A Cure For Robert, Inc.<\/strong><\/figcaption><\/figure>\n

Helen Vice is the proud mother of Robert and Anna and the Co-Founder and Co-President of A Cure for Robert, Inc. A graduate of Northwestern University, she works on the Associate Well-being Team at Humana Inc., advising senior leaders on strengthening workplace culture and enhancing employee well-being. Since Robert\u2019s MPS IV (Morquio syndrome) diagnosis in 2008, Helen has been deeply committed to fostering a happy and healthy life for her children. While navigating the challenges of a rare disease, she finds hope in working toward a cure\u2014not just for Robert, but for countless other children.<\/p>\n

 <\/p>\n

\n
\n