Arrival & Registration
Welcome and Opening Remarks
Dr. Mark Sorrentino, VP Center for Pediatric Clinical Development, PRA Health Sciences
History of World Children's Day
Jennifer Paradis Behle, NY Regional Board Member UNICEF USA
Hope For Children and Their Parents: The Power of Pediatric Clinical Trials to Defy Natural Selection!
Dr. John Vanchiere, Professor of Pediatrics, LSU Shreveport
The Patient's Perspective: Clinical Trials Through the Eyes of Teenagers
Melanie Mendez-Villarrubia & Nicole Mendez-Villarrubia, Marfan Syndrom Patient Advocates
Lunch/Activity (Children's Kit Assembly for Donation to CHOP)
Strategies Behind Building Effective Patient Engagement
Jill McNair, Sr. Director, Health Communication Services, The Center for Information and Study on Clinical Research Participation (CISCRP)
The Power of Patient-Centered Design
Aaron Horowitz, CEO & Founder, Sproutel
Panel Discussion/Closing Remarks
Mark Sorrentino, MD, MSVice President, Center for Pediatric Clinical Development
PRA Health Sciences
Dr Sorrentino has more than 20 years of experience in the pharmaceutical and biotech industries. He currently leads PRA's global Center for Pediatric Clinical Development (CPCD) and also holds an appointment as an assistant clinical professor at the George Washington University School of Medicine. Prior to joining PRA, Dr Sorrentino spent 5 years as the global chair and founder of the pediatric practice area at a leading CRO, overseeing all aspects of strategy and pediatric clinical development, as well as the global therapeutic head of critical care. In addition, Dr Sorrentino has served as the global chief medical officer at a large biopharmaceutical company. Prior to joining the industry, Dr Sorrentino was an attending physician in the CNMC pediatric intensive care unit for 8 years and participated in numerous industry-sponsored critical care trials. He holds active medical licenses in Washington, DC and Maryland and is on the board of directors for the non-profit life sciences education company, the CMR Institute.
Jennifer Paradis BehleNY Regional Board Member
Chief Executive of the Chappell Culpeper Foundation, a mid-sized private philanthropic foundation creating pathways for sustainable upward mobility for young people in Greater Philadelphia and Puerto Rico. She recently launched a mental health tech venture, Hau Therapeutics, developing an artificial intelligence to address the gap adolescents and youth face across the globe in accessing clinically effective mental health care. Previous roles include management consultant and Director for Gap International, a business performance consulting firm, and senior management roles with several healthcare organizations. Jennifer serves as a New York Regional Board Member of UNICEF USA and leader of its Greater Philadelphia Committee.
John Vanchiere, MD, PhDProfessor of Pediatrics
LSU - Shreveport
Dr. Vanchiere is a Pediatric Infectious Diseases Specialist who has been engaged in clinical and translational research for over 20 years. A graduate of Tulane University and Emory University School of Medicine, he completed residency and fellowship at Baylor College of Medicine and Texas Children’s Hospital. His NIH-funded research focuses on polyomavirus disease in immune compromised patients and the development of therapeutic and prophylactic strategies to prevent these rare, but life-threatening diseases. John’s passion for clinical research is fueled by his love of science and medicine, and he is a fierce advocate for children’s health in his home state of Louisiana.
Nicole Mendez-VillarrubiaMarfan Syndrome Patient Advocate
Nicole is an 18 year old rare disease advocate and member of the International Children’s Advisory Network (iCAN).She has a rare genetic disease called Marfan Syndrome, which affects the body’s connective tissue. Nicole strives to make an impact on multiple levels, including clinical research and healthcare policy. She is involved with the Young Adult Representatives of RDLA and serves as the Community Engagement Manager for Diversability. In her free time, she enjoys reading, writing, and photography.
Melanie Mendez-VillarrubiaMarfan Syndrome Patient Advocate
Melanie is a 16 year old living with a rare disease called Marfan Syndrome, a genetic disorder that affects the body’s connective tissue. Melanie uses her experiences to help others, by participating in clinical trials and connecting with fellow patients. She is passionate about art and exploring her creativity.
Jill McNairSenior Director, Health Communication Services
The Center for Information and Study on Clinical Research Participation (CISCRP)
Jill has worked at CISCRP for ten years. She oversees a team dedicated to helping sponsor companies provide lay language summaries to study volunteers. She is passionate about providing education to the public so they can make an informed decision as to whether clinical research is right for them. Working at CISCRP affords her the opportunity to engage patients in the continuum of the clinical research process.
Aaron HorowitzCo-founder & CEO
Aaron is a maker; from sculptures to business, he is fascinated with the process of taking an idea from concept to reality. His experience growing up with human growth hormone deficiency inspired a desire to bring empathy, design, and a patient-centered mindset to healthcare. He is the co-founder and CEO of Sproutel, a research and development workshop focused on creating play-based healthcare innovations. He holds a degree in Mechatronics and User Interaction Design from Northwestern University, a major he created to pursue a passion for understanding how people play with robots! Through his work, Aaron is on a mission to design technology with purpose. When unplugged Aaron is likely either carving stone or surfing.