About iCAN
Our Mission
To foster a greater global understanding of the importance of the pediatric patient and caregiver voice in healthcare, clinical trials, and research.
Most of our youth members range in age from 8-18, with some chapters having members a little younger or a little older. Many of our youth are medically complex or live with chronic or rare disease, though some do not have any diagnosed medical condition. All are interested in having their voices heard by individuals, industry, and government agencies who can make a difference in pediatric healthcare.
Every Child. Everywhere.
Meet The Team
Charlie is the Founder of the International Children's Advisory Network and has been the Chairman of the Board of Directors since its inception. In addition. Throughout his 25+ year Pfizer career, Charlie has taken on different roles in clinical development, clinical safety/risk management, and medical affairs. He is also the Founder and Past Chair of the American Academy of Pediatrics Section on Advances in Therapeutics and Technology and a former member of the Board of Directors for the Hezekiah Beardsley Connecticut Chapter of the American Academy of Pediatrics. Charlie served multiple terms as a governor-appointed member of the Connecticut Pharmaceutical and Therapeutics committee and served on the State of Connecticut Immunization Task Force following an appointment by the Speaker of the House. Charlie is a board-certified pediatrician who earned his M.D. at the University of Connecticut School of Medicine and completed his pediatric residency at Connecticut Children's Medical Center in Hartford. He is a Clinical Instructor of Pediatrics at the University of Connecticut School of Medicine and served as a member of the medical staff at Connecticut Children’s Medical Center. Charlie and his wife, Heather, have four children and a grandchild.
Charles Thompson
Founder and Chairman
Leanne West holds the position of Pediatric Innovation Catalyst at the Global Center for Medical Innovation and serves as the Chief Engineer of Pediatric Technology at Georgia Tech. In her capacity, she acts as the technical intermediary between Georgia Tech and children's hospitals, with a focus on identifying unmet clinical needs and developing appropriate solutions. She serves as the President of the International Children's Advisory Network (iCAN), a nonprofit organization dedicated to promoting the significance of the pediatric patient experience and input in the realm of medical research and development. iCAN is actively engaged as a partner in the FDA CDRH, Patient and Caregiver Connection, and the Total Product Life Cycle Advisory Program. Leanne is an esteemed member of several distinguished committees and boards, including the International Society for Pediatric Innovation Executive Team, the Patient-Focused Medicines Development Board, the steering committees for both the Pediatric Trial Network (PTN) and the Multi-Regional Clinical Trials (MRCT) Center of Brigham and Women's Hospital and Harvard (MRCT). Additionally, she contributes her expertise as a member of the Medical Device Innovation Consortium (MDIC) Patient Preference Information Committee and the MDIC National Evaluation System for Health Technology Coordinating Center (NESTcc) governing committee. Her involvement extends to the Technology Association of Georgia Digital Health Board and the Georgia Technology Authority Board. Leanne's remarkable contributions have been acknowledged in her recognition as Women in Technology's Woman of the Year in 2014. Notably, she brings a unique perspective to her work, as she herself is a patient contending with two rare diseases. In recognition of her insights and experience, she serves on the Foundation for Sarcoidosis Research Patient Advisory Council.
Leanne West
President
Dr. Chester Koh is a pediatric urologist and “physicianeer” at Texas Children’s Hospital (TCH), and Professor of Urology, Pediatrics, and OB/GYN at Baylor College of Medicine (BCM). He also holds adjunct titles at UT Houston and in the Rice University Department of Bioengineering as well as serves as an External Advisory Board Member for the Texas A&M Department of Biomedical Engineering and a member of the TMC Venture Fund Investment Advisory Committee. Dr. Koh received his B.S. with Honors in Mechanical Engineering from UC Berkeley, his MD from Tufts University School of Medicine, and completed his urology residency at USC, and his pediatric urology fellowship at Children’s Hospital Boston / Harvard Medical School, as well as his MBA from the University of Illinois. His clinical area of expertise is in minimally invasive surgery in children for pediatric urologic conditions, and especially with robotic surgery and the device needs in this area. He is also the founder, contact principal investigator, and executive director of the Southwest National Pediatric Device Innovation Consortium (SWPDC) which is a FDA P50 grant-supported multi-institutional consortium that includes TCH and BCM, Texas A&M, Rice, University of Houston, and University of Minnesota. SWPDC is dedicated to improving children’s health by supporting pediatric device innovators in creating novel pediatric medical devices with local, regional, and national institutional and innovation partners.
Chester J. Koh
Secretary
Jon Haygood serves as the Assistant Treasurer for Atlanta-based Southern Company (NYSE:SO), a leading U.S. energy company serving 9 million customers with clean, safe, reliable, and affordable electricity and natural gas. He is currently serving or has served on the board of directors for multiple small start-up companies in treasury/financial advisory roles. Jon holds a bachelor’s degree in Industrial Engineering from Georgia Tech and is married to his high school sweetheart Emily. Together they have two grown sons, Jake and Sam, who were both involved in KIDS Georgia and iCAN. Jon began involvement with iCAN and KIDS Georgia in 2014 as a parent, has attended all but one research and advocacy summits with his family, and has personally seen the benefits of sharing and hearing experiences of other parents and kids. iCAN has created educational, social, and professional opportunities for his family that are challenging to find outside of the organization. Jon also sees the immense impact the organization can have on the future of pediatric research and medicine and endeavors to ensure iCAN remains on strong financial footing well into the future.
John Haygood
Treasurer
Sabina Schmidt Goldstein is a dynamic leader driven by a profound passion for prioritizing the pediatric patient perspective in medicine, innovation, and research. With a background as both an educator and the daughter of a neonatologist, Sabina's journey into pediatric empowerment began early, attending conferences with her father, where she developed a deep understanding of the importance of prioritizing children's needs in decision-making. Sabina's academic pursuits, including her attainment of a Master of Arts in Teaching & Preliminary Multiple Subject Teaching Credential from the University of Southern California and a Bachelor of Arts in Psychology and Social Behavior from the University of California, Irvine, attest to her firm belief in prioritizing the child's perspective and recognizing the significance of holistic child development in shaping institutional frameworks and practices. Moreover, as a teacher at heart, Sabina grasps the pivotal role children assume as stakeholders in healthcare. These experiences have propelled her fervor to ensure that pediatric patient perspectives are not merely acknowledged but deeply valued within medical research and practice. In her role as the Executive Director at iCAN, Sabina leads initiatives aimed at empowering pediatric patients to actively participate in shaping their healthcare experiences and the pediatric landscape, as well as their paths within it. She has designed engaging curricula focused on careers in healthcare and the regulatory landscape, collaborating closely with healthcare professionals and educators to ensure program relevance and effectiveness. Sabina's leadership is marked by her unwavering commitment to creating environments where pediatric patients feel empowered to voice their opinions and contribute meaningfully to healthcare decision-making. Her vision is to build a future where every child's perspective is recognized and respected in pediatric medicine, innovation, and research.
Sabina Schmidt Goldstein-Bercerra
Executive Director
Abby Clark is a designer, illustrator, problem solver, and coordinator who is experienced in creating and delivering patient-centric visual materials as well as coordinating projects with key stakeholders in the pediatric healthcare world. She developed her passion for the pediatric space during her time at the Georgia Institute of Technology, where she gained her B.S. in LMC with a concentration in Interactive Media and Design. As Director of Operations for iCAN, she now uses her background in UI/UX and graphic design to support the iCAN community in developing tailored health literacy initiatives, facilitating connections with key stakeholders in the pediatric realm, and supporting iCAN's programs through a design forward, people-first lens. Abby strives to empower pediatric patients to feel confident in themselves and in the knowledge that they truly are the experts in their own conditions. She believes that by uplifting the pediatric patient voice, all facets of healthcare will be available to every child around the world.
Abby Clark
Director of Operations
Community Volunteers
Armaan Verma is a Master's Student in Biomedical Innovation in Biomedical Engineering at Georgia Tech. She has research, hands-on clinical experience, device development, business, and marketing skills. She is passionate about pediatric healthcare and empowerment, aiming to support children's health to ensure their well-being and happiness.
Armaan Verma
Communications Intern
Boris Schmidt Goldstein, originally from the Los Angeles area, is currently pursuing his BA in International Business at UC San Diego. His deep interest in globality and interconnectedness fuels his passion for crossing cultural dynamics with facets of business. Boris is particularly drawn to iCAN's mission as it embodies the essence of global collaboration and empowerment in medicine for children worldwide. Outside of academics, Boris enjoys genealogy, sports, video games, and listening to music. He aims to contribute meaningfully to iCAN's impactful work while gaining valuable experience in the field of international business and prioritizing the patient perspective globally.
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Boris Goldstein
Business Development Intern
Adhiti Parupalli is the founder and president of Art to Awe, a program dedicated to providing a platform for individuals to express their artistic talents and harness the power of art. Currently a junior at Ellington High School in Connecticut, Adhiti aspires to pursue a career in healthcare. Driven by her curiosity for biology and her commitment to amplifying pediatric voices, Adhiti serves as the President of the Connecticut chapter of iCAN. She has presented at the 2024 Pediatric Academic Societies Conference in Toronto, Canada, and the 2024 iCAN Summit in Bari, Italy. At this summit, Adhiti was honored with the Distinguished PAS 2024 PTN and MPRINT Hub Panelist Award by Jumo Health and won the logo design competition for the MODERATO clinical trial study hosted by Teddy Network. Adhiti's passion for healthcare extends to legislative work, focusing on maternal and neonatal healthcare and the nutritional health of infants and their families in Connecticut. She is state and nationally certified as an emergency medical responder (EMR) and actively works on the ambulance. In addition to her healthcare pursuits, Adhiti has a strong passion for scientific research, particularly in the field of bacteriology. She has conducted research on resistant Acinetobacter baumannii and persistent Escherichia coli cells. Outside of the lab, Adhiti enjoys painting, singing, volunteering at her local assisted living community, and playing the flute in her school's marching band and wind ensemble.
Adhiti Parupalli
Editorial Coordinator
Advisory Board Members
Phyllis Kennel, MS RD LDN, PMP
Associate Director, Government and Network Trials
Duke Clinical Research Institute
Phyllis has over twenty years of strategic and tactical experience in the clinical, public health and community research. She has been involved with iCAN since 2019 serving as a iCAN’s board member, participating at the iCAN Summits and is currently working with some of iCAN youth to create a KIDS Research virtual chapter.
Dr. Sharon Smith
iCAN Director of Research, Professor, Pediatrics, School of Medicine,
UConn Health
Coming soon!
Niccole Alexander
Senior Director, Subspecialty Initiatives Department of Primary Care and Subspecialty Pediatrics, American Academy of Pediatrics
Coming Soon!
Deb Discenza
Co-Founder & Executive Director, PreemieWorld Foundation, Parent Council Co-Chair
Deb Discenza gave birth to her daughter at 30 weeks gestation in 2003. From day one she was thrust into healthcare and never looked back. Whether it was her starting the award-winning Preemie Magazine in 2005 or co-writing The Preemie Parent’s Survival Guide to the NICU and launching PreemieWorld, she saw a huge void in parent education in and out of the NICU, especially in needy communities. In 2020 she Co-Founded the Alliance for African American NICU Families, a non-profit providing healthcare support in the form of a free wearable breast pump. In 2023 she founded and is the Executive Director of PreemieWorld Foundation, Inc., providing access to patient education in the form of like-minded books and long-term outcomes data for premature infants into the geriatric years. Also in 2023 she founded and is the Executive Director of the Books for Healing Partnership, Inc. going nowhere no one else can with patient education in the form of a children’s story to be used in all forms of healthcare. When not doing all of that, Deb serves or has served on numerous boards and committees including the International Neonatal Consortium, the National Coalition for Infant Health, and NICU Parent Network as well as the International Children’s Advisory Network and Kindred 360.
Dr. Anthony Chang
Chief Intelligence and Information Officer for CHOC, Chair of the Board for the International Society for Pediatric Innovation (iSPI)
Coming Soon!
Margaret Patton
Director, Pediatric Center of Excellence, Clinical Development GDD, Novartis Pharmaceuticals Corporation
Coming Soon!
Dr. Alberto Tozzi
International Society for Pediatric Innovation (iSPI)
Coming Soon!
Ella Schaffer
Co-Chair of the Young Professional's Network and Undergraduate Student at Trinity College in Hartford, Connecticut
Ella Schaffer is part of the class of 2027 at Trinity College in Hartford, Connecticut. She completed the Global Health Humanities Gateway program and is pursuing a degree in neuroscience while on a pre-med track. Inspired by her diverse experiences growing up in Chicago, she aspires to work as a physician serving both pediatric patients and underserved populations. Ella joined iCAN seeking to understand the perspective of the patient and to gain greater insight into pediatric healthcare. Additionally, being Polish, she was drawn to iCAN’s global outreach and emphasis on collaboration among various countries. Ella looks forward to leading the YPN and contributing to iCAN's noble mission.
Martine Dehlinger Kremer, PhD, MS
Vice President Scientific Affairs, Pediatric Subject Matter Expert, Center for Pediatric Clinical Development, Drug Development Solutions, ICON PLC, President, EUCROF
Coming Soon!
Gwyneth M. Mogg-Hall, MPH
Director, Clinical Trial Patient Engagement Lead, Pfizer Research & Development | Clinical Trial Diversity & Patient Engagement, Pfizer
Coming Soon!
Jennifer Degl
School Leader, Author, Advocate and President of the NICU Parent Network
Jennifer Degl is the mother of four, including a micro preemie who was born at 23 weeks gestation, and the founder of Speaking for Moms & Babies, Inc. Her mission is to educate the public on maternal and neonatal health issues. She is the author of three books and several articles in the Journal of Pediatrics, Journal of Perinatology, Frontiers in Pediatrics, and more. Jennifer is also a passionate public speaker, an active member of the International Neonatal Consortium Leadership Team and the co-chair of the International Children's Advisory Network Parent Chapter. Jennifer is also the President of the NICU Parent Network and serves on the Board of Directors for the NIDCAP Federation International. Jennifer is the creator and coordinator of Maria’s Hope, the NICU parent mentor program at Maria Fareri Children’s Hospital at Westchester Medical Center in NY and she has been a high school science teacher for 25 years.
DR. MITCH GOLDSTEIN
Medical Director, Neonatal Intensive
Care Unit at Citrus Valley
Coming Soon!
John Ssentamu
Chapter Leader KIDS Uganda
Coming soon!
Donato Bonifazi
Chief Executive Officer, CVBF,
Chapter Leader KIDS Bari
Coming Soon!
Diana Lynnette Fisher
Associate Director Patient Engagement: Access and Retention - CoDesign, Eli Lilly
Coming Soon!
Andrea Furia-helms
Former Director of Patient Affairs, U.S. Food and Drug Administration (FDA)
Coming Soon!
Heather Peterson, RN, BSN
Paediatric Strategy Liaison
Centre for Paediatric Clinical Development
Coming Soon!
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Uma Subrayan
Young Professional's Network Co-Chair
Uma Subrayan is a medical student at Tulane University School of Medicine in New Orleans, Louisiana. She earned her Bachelor of Science from The Ohio State University and her Master of Science from Tulane University. Prior to medical school, Uma worked in pediatric bone marrow transplant research at C.S. Mott Children’s Hospital, where she also served as chair of the KIDS Michigan chapter. She has been actively involved with iCAN (International Children's Advisory Network) since 2017, an experience that has profoundly shaped her understanding of the importance of patient perspectives in healthcare. Through her work with iCAN and leadership in the KIDS Michigan chapter, Uma developed a strong commitment to amplifying the voices of children and families in medical research and decision-making. As a future physician, she hopes to carry this passion into her clinical practice by championing patient-centered care and ensuring that patients are active participants in their healthcare journeys. Uma is dedicated to bridging the gap between research and real-world patient experiences, with the goal of making medicine more inclusive to the needs of those it serves. Outside of iCAN and medicine, Uma enjoys quilling, practicing Indian classical dance, and curling up with a good fiction book.
Meghan Herrington
Youth Council Co-Chair and Student at Brown University
Meghan Herrington is a student at Brown University, where she is double concentrating in Medical Anthropology and Health & Human Biology on a pre-med track. She initially joined iCAN as a member of the Kids Illinois: Lurie Children’s Hospital KAB chapter, where she has shared her journey with chronic illnesses to help improve healthcare standards. As a patient with Ulcerative Colitis and Chronic Recurrent Multifocal Osteomyelitis, she aspires to pursue a career in which she can treat pediatric rare-disease patients with the same care and respect her healthcare team had for her, and use her patient perspective to advance patient-centered care. Additionally, having grown up in Chicago and having recently lived in Providence, Meghan has been exposed to the disparity in health outcomes among patients of various socioeconomic and sociocultural backgrounds, and thus she hopes to contribute to the evolution of more inclusive, holistic treatments that takes social determinants of health into account. Upon attending her first iCAN Summit in Lyon, France, Meghan was ecstatic to meet patients with similar experiences to hers — from all around the world — and knew she wanted to play a role in bridging this connection and igniting this passion in youth patients, worldwide. Now, as her time as iCAN Youth Council Co-Chair concludes, Meghan seeks to extend her involvement by initiating an iCAN chapter at Brown University, which would be the first iCAN chapter in Rhode Island!
Sigrid Nilius
Pediatric Development Strategy Lead, UCB
Coming Soon!
Michelle Burgess
iCAN Community Outreach
Coming Soon!
