About iCAN

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.

Our team delivers strategies and solutions that drive equitable trial representation and elevate the patient voice in partnership with communities to bring meaningful outcomes to patients. Gwyneth works in a team that spans all therapeutic areas in research and development at Pfizer to ensure that our clinical trials represent all people. Our team works with patient advocacy groups to ensure patients have a pathway to work with clinical trial teams to improve our operations and scientific development of breakthroughs that change patients lives.

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Andrea Furia-Helms is a patient and community-focused public health leader with over 25 years of experience in developing, implementing, and overseeing public health and community engagement programs. At the FDA, she served in the Office of the Commissioner where she oversaw the FDA Patient Representative Program then later became the Director of Patient Affairs. In this role, she was instrumental in building a staff dedicated to prioritizing and elevating the patient voice. Ms. Furia-Helms is recognized for advancing patient-centered policies through advocacy, partnership-building, and education, expanding the agency’s engagement with patients and advocacy organizations, and empowering communities to make informed health decisions. She initiated and led programs such as the Patient Listening Sessions and the Patient Engagement Collaborative, significantly expanding opportunities for patient involvement in FDA meetings to inform regulatory decision-making. Ms. Furia-Helms also briefly served in the Center for Drug Evaluation and Research, focusing on education, collaboration, and policy development to promote rare disease drug innovation. Prior to the FDA, Ms. Furia- Helms was Director of the Back to Sleep campaign at the National Institutes of Health, a public-private partnership to reduce Sudden Infant Death Syndrome (SIDS). She led national outreach and education efforts with a focus on African American, American Indian, and Latino communities. Ms. Furia-Helms has a Master of Public Health (MPH) from The George Washington University, a Bachelor of Science in Community Health Education from the University of Maryland, and a Bachelor of Arts in Psychology from Framingham State University.

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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.

Adhya Duggal is a high school senior from Mason, Ohio. Having lived in three countries, she understands the disparities that influence healthcare access in diverse contexts. As a patient managing chronic pain, she is actively involved in leading several advocacy-related nonprofits, including Women in STEM and the Mind Matters Movement, and has authored both medical and policy-related research. She aspires to work as a doctor and advocate for her patients in policy one day. Adhya is drawn to the mission of ICAN and is excited to contribute!

With over 20 years of experience in clinical drug development and strategic planning, Sigrid has dedicated the past decade to pediatric drug development and related strategies. She holds the position as the Development Strategy Lead for Pediatrics within the Special Patient Populations (SPP) group at UCB, where she leverages internal pediatric expertise to support cross-functional teams and lead strategic planning initiatives. Her role focuses on the early integration of pediatric needs into UCB's asset strategies. Since joining UCB in 2010, Sigrid has held various leadership positions, including Clinical Program Director and Clinical Operations Lead. She has led clinical strategy development, contributed to clinical development plans, and overseen the execution of clinical programs across a range of therapeutic areas, including neurological and immunological diseases, both rare and non-rare autoimmune conditions. Prior to joining UCB, Sigrid worked at a Phase I CRO unit, holding multiple positions and providing consultancy support to biotech companies. Her expertise spans study management and comprehensive drug development strategy. Sigrid shows her passion for her work through her ongoing engagement with external stakeholders, including patient advocacy groups and regulatory agencies, where she advocates for pediatric patients and foster collaborative relationships that prioritize their needs. Sigrid holds a Ph.D. in Biology, as well as Master’s and Bachelor’s degrees in Biology from Heinrich- Heine University in Düsseldorf, Germany.

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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 Donato Bonifazi is an Economist specialised in European Project Management and Chief Executive Officer at CVBF, a non-profit research consortium with 20 years’ experience in health and pharmaceutical research. He is Chair of the Events & Training WG at EUCROF (European CRO Federation), Board Member at TEDDY – European Network of Excellence for Paediatric Research, Member of the Coordinating Group at Enpr-EMA, Member of the ACT EU multi-stakeholder platform Advisory Group, Member of the iCAN - International Children Advisory Network Advisory Group. He has been project coordinator and trial manager of the multinational paediatric clinical trials EU-funded project DEEP – DEferiprone Evaluation in Paediatrics (FP7 GA 241683), involving more than 20 clinical centers from European and Mediterranean countries, and is involved in several projects aimed at enhancing research for paediatric and rare diseases patients: c4c - Network for European Clinical Trials for Children (H2020 GA 777389); EJP RD – European Joint Programme on Rare Diseases (H2020 GA 825575). He is Coordinator of EPTRI (European Paediatric Translational Research Infrastructure) aimed to create the framework for a new Research Infrastructure (RI) intended to enhance technology-driven paediatric research in drug discovery and early development phases to be translated into clinical research and paediatric use of medicines, diagnostics and devices, grouping more than one hundred research centers form 25 EU and not EU Countries. In March 2024, the EPTRI AISBL has been established in Leuven, Belgium, and the OrphaDev4Kids project has been selected by the EU to foster the development of paediatric medical devices for the treatment of children with rare diseases.

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.

Rebecca Schelkun is a public health expert and strategic leader who serves as Vice President of Client Strategy at Jumo Health. With a background in epidemiology and biostatistics, she blends scientific expertise with a deep passion for health equity, patient advocacy, and creative engagement, particularly in the areas of pediatrics and rare disease clinical research. Rebecca has played a pivotal role in expanding Jumo Health’s offerings, helping life sciences companies optimize the patient experience across clinical trials and commercial programs. She is especially dedicated to elevating real patient and caregiver stories to reduce fear, build understanding, and empower families to make informed health decisions. Rebecca lives in New Jersey with her two daughters, her husband, and her goldendoodle. When she's not working, you can find her gardening or watching a scary movie (and always counting down the days until Halloween!)

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Maggie holds a degree in Chemistry and has been involved in the field of clinical trials research for over 25 years. She began her career in academia as a clinical research coordinator for the Lurie Cancer Center of Northwestern University, covering solid tumors and leading the training program for the Clinical Research Office. During this time, she also served on the Scientific Review Committee and worked closely to advocate for patient engagement in clinical research before making the move to Novartis. After joining the Global Oncology team at Novartis, Maggie lead trials in small cell lung cancer, non-Hodgkins lymphoma, and pediatric medulloblastoma. It was this last trial that sparked her interest in pediatrics and she joined the Novartis Pediatric Center of Excellence. As the Director for Strategy and Operations, Maggie oversees the overall structure for the Pediatric Center of Excellence. She aligns the strategic vision and objectives, providing review and consultation services, as well as overseeing education and training initiatives. Maggie currently serves as the liaison for pediatric patient engagement, protocol and data standards, template and process development. In addition, Maggie is actively engaged in the development of pediatric clinical trial networks and patient resource communities, supporting pediatric drug development goals across Novartis.

Heather Peterson is a registered nurse and serves as a Pediatric Strategy Liaison with one of the worlds leading clinical research organizations. Through personal experiences Heather recognizes the stress siblings face when a loved one suffers from a chronic condition. The Sibling Chapter will provide a safe outlet for all siblings while forming lifelong friendships.

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.

William Wang is a senior at Olentangy Liberty High School in Columbus, Ohio, where he competes on the Cross Country and Track teams. Passionate about pediatric advocacy, William is committed to amplifying the voices of patients who cannot always speak for themselves. He has been actively involved with ICAN for three years and looks forward to furthering his impact through this role.

Dr. Dehlinger-Kremer brings over 30 years of experience in the research industry, with a particular focus on global regulatory affairs, medical affairs, maternal-fetal medicine and pediatric leadership. She has been actively involved in advancing pediatric research and drug development, supporting innovative solutions in maternal-fetal medicine, and contributing to global regulatory strategies. At ICON’s Center for Pediatric Clinical Development, she supports pediatric developments and advances in pediatric research. Additionally, as Co-Chair of ICON’s Maternal-Fetal Medicine Unit, Dr. Dehlinger-Kremer contributes to the search for innovative solutions in maternal-fetal health Prior to her tenure at ICON, Dr. Dehlinger-Kremer held several executive leadership roles at global CROs and has extensive experience in global drug development across more than 40 countries. Her vision and leadership extend to active involvement in several professional organizations. She is an observer member of the Coordinating Group of Enpr-EMA at the European Medicines Agency (EMA), Chair of the Pediatric Working Group, and President of the European CRO Federation (EUCROF). Additionally, she serves as Chair of the European Forum for Good Clinical Practice (EFGCP) Children’s Medicines Working Party, Board Member of EFGCP, and Advisory Board Member of the International Children’s Advisory Network (iCAN). She is also a member of the ACT EU MSP Ad Hoc Advisory Group. In 2015, Dr. Dehlinger-Kremer was named one of PharmaVOICE’s 100 Most Inspiring People in Life Sciences. Dr. Dehlinger-Kremer earned a Doctorate in Sciences from J. W. Goethe University in Frankfurt am Main, Germany, a Diploma of Advanced Study in Neurophysiology from University Louis-Pasteur, Strasbourg, France, and a Master of Sciences degree from University Moulin de la Housse in Reims, France.

With over 20 years of experience in clinical drug development and strategic planning, Sigrid has dedicated the past decade to pediatric drug development and related strategies. She holds the position as the Development Strategy Lead for Pediatrics within the Special Patient Populations (SPP) group at UCB, where she leverages internal pediatric expertise to support cross-functional teams and lead strategic planning initiatives. Her role focuses on the early integration of pediatric needs into UCB's asset strategies. Since joining UCB in 2010, Sigrid has held various leadership positions, including Clinical Program Director and Clinical Operations Lead. She has led clinical strategy development, contributed to clinical development plans, and overseen the execution of clinical programs across a range of therapeutic areas, including neurological and immunological diseases, both rare and non-rare autoimmune conditions. Prior to joining UCB, Sigrid worked at a Phase I CRO unit, holding multiple positions and providing consultancy support to biotech companies. Her expertise spans study management and comprehensive drug development strategy. Sigrid shows her passion for her work through her ongoing engagement with external stakeholders, including patient advocacy groups and regulatory agencies, where she advocates for pediatric patients and foster collaborative relationships that prioritize their needs. Sigrid holds a Ph.D. in Biology, as well as Master’s and Bachelor’s degrees in Biology from Heinrich- Heine University in Düsseldorf, Germany.

Leo has been a member of the International Children’s Advisory Network for three years and is currently involved with the KIDS Walter Payton Chapter, where he helps organize initiatives to promote youth engagement in pediatric healthcare. He enjoys reading, writing, and watching movies, but his passion is in advocacy—ensuring that young people have a voice in the medical decisions that affect them.

Anvita Ambardekar is a 17-year-old high school junior from Southern California. After being diagnosed with Crohn’s Disease following a challenging diagnostic journey, she became passionate about improving healthcare for pediatric patients. Inspired by her experience, Anvita joined iCAN in 2023 to advocate for patient-centered solutions and help reduce the invasiveness of medical procedures for children. She is a founding member of the CHOC iCAN Chapter and currently serves as the Funding Director. She is also a member of the KIDS Summit Planning Committee for the 2025 iCAN Summit in Montreal. Anvita is especially passionate about the intersection of biotechnology, business, and advocacy. She hopes to develop pediatric-focused medical devices and pursue a career that combines biomedical engineering, business, and public policy to create innovative solutions that improve patients’ lives and make healthcare accessible to everyone.