Board of Directors
Board of Directors
The UDNF is led by and for patients and families. As such, a majority of our board members must be individuals with undiagnosed or rare diseases or their immediate family members.
Max G. Bronstein, MPP | he/him
Chief Executive Officer, Aviva Strategies
Max G. Bronstein is a mission-driven health policy entrepreneur and consultant with 18-years of expertise working in the corporate, government, academic, and non-profit settings. He previously led government affairs and patient advocacy at Crinetics Pharmaceuticals, a San Diego-based company with a focus on rare endocrine diseases. Max was the Assistant Director for Health Innovation at the White House Office of Science & Technology Policy (OSTP), where he led initiatives relating to the launch of a new federal agency (ARPA-H) and improving patient access to precision diagnostics like genomic sequencing. Previous roles include Senior Director of Health Policy & Corporate Affairs at Audentes Therapeutics, Chief Advocacy & Science Policy Officer at the EveryLife Foundation for Rare Diseases, and Director of Science Policy at Research!America. He holds a master’s degree in public policy and a certificate in science and technology policy from the Ford School at the University of Michigan in addition to a BA in biology from Ithaca College, with a minor in writing.
Kelly Cervantes, Secretary | she/her
Writer, Speaker, Advocate
Kelly Cervantes is an award-winning writer, speaker, and advocate best known for her blog “Inchstones” where once a week she shared the stress, love, and joy that came with parenting her medically complex daughter, Adelaide. Since Adelaide’s passing, Kelly has continued to write candidly about her arduous and often contradictory grief journey. Her debut book, Normal Broken: The Grief Companion for When it’s Time to Heal But You’re Not Sure You Want to is available for presale and will be released on Nov 7th by BenBella Publishing.
She has been published in The Chicago Tribune, The Chicago Sun-Times, and Cosmopolitan as well as quoted in the New York Times, CNN, and People. Other accolades include, “Chicagoans of The Year” by CHICAGO magazine in 2017 for her work with her husband, Hamilton star Miguel Cervantes, in the epilepsy community and WEGO Health’s Best in Show: Blog in 2019. She is a past Board Chair for the non-profit CURE Epilepsy and also hosts their bi-weekly podcast, “Seizing Life” where she interviews scientists, doctors, and individuals affected by epilepsy.
Kelly resides in Maplewood, NJ with her husband, children, and their two dogs, Tabasco and Sriracha.
Wendy Chung | she/her
Chief, Department of Pediatrics; Physician-in-Chief; Mary Ellen Avery Professor of Pediatrics, Harvard Medical School
Wendy Chung, M.D., Ph.D.
Dr. Wendy Chung is a clinical and molecular geneticist who directs the Clinical Genetics program at Columbia University and who serves as the Co-Prinicipal Investigator for the Harvard clinical site of the Undiagnosed Diseases Network (UDN). She is an associate professor of pediatrics and medicine. Dr. Chung directs NIH funded research programs in many human genetic conditions including autism, pulmonary hypertension, and birth defects. She leads the Simons VIP study characterizing genetic forms of autism and works on novel treatments for autism. She is a member of the National Advisory Council for Human Genome Research and the Genomics & Society Working Group. Dr. Chung enjoys the challenges of genetics as a rapidly changing field of medicine and strives to facilitate the integration of genetic medicine into all areas of health care in a medically, scientifically, and ethically sound, accessible, and cost effective manner.
F. Sessions Cole, Board Chair | he/him
Professor of Pediatrics, Washington University School of Medicine
Dr. Cole is a neonatologist who began studying rare diseases with genomic methods during his fellowship in the laboratory of the late Harvey R. Colten, M.D. He has participated in the discovery of new genetic causes of structural birth defects and of respiratory failure in full-term infants, expanded phenotypes of known genetic diseases, and suggested novel therapeutic strategies. His research has been continuously supported by the National Institutes of Health (NIH) as a Principal Investigator for more than 25 years. Most recently, he led the NIH-funded Undiagnosed Diseases Network (UDN) Clinical Site at Washington University from 2018-2021. He currently co-chairs the UDN’s Sustainability Working Group and is leading the UDN’s Therapeutic Matching Committee aimed at identifying therapies for rare disease patients.
Sika Dunyoh | she/her
Senior Director of Patient Advocacy, Travere Therapeutics
Sika Dunyoh is a highly experienced professional in the field of rare disease patient advocacy. She has experience in patient engagement, patient education, health equity, and DEI programs as well as marketing. Her passion for advocacy was inspired by her sister Carolyn, who passed away from complications of an ultra-rare autoimmune disease called relapsing polychondritis in 2008. Sika is currently the Senior Director of Patient Advocacy at Travere Therapeutics and continues to use her personal experience to drive her work. Prior to Travere, Sika worked at the National Organization for Rare Disorders overseeing and developing educational initiatives for patients and caregivers, medical professionals, and students pursuing careers in healthcare.
Troy Evans, Treasurer | he/him
Owner/President, Cinch Home Loans
Troy Evans is the Owner and President of Cinch Home Loans. He is a patient of the Undiagnosed Diseases Network (UDN) and a resident of Draper, UT. He entered the UDN as a patient in 2018 at the UCLA site. Despite not yet receiving a diagnosis, his personal experience has given him a unique perspective and deep commitment to the organization’s mission and sustainability.
Tasha Faruqui | she/her
Pediatrician, Author, Advocate
Tasha Faruqui is a pediatrician, speaker, advocate, and author of the USA Today bestselling book Keep Your Head Up: A Mother’s Story of Chasing Joy in the Face of Grief (Jossey-Bass, 2025). Inspired by her father, a doctor to an underserved rural community, Tasha joined the National Health Service Corps after medical school. However, her focus shifted when her daughter Soraya was born with a rare genetic disorder. Tasha is now a passionate advocate for parents of medically complex children and those experiencing anticipatory grief, regularly sharing her message of hope at Cincinnati Children’s Hospital, Make-A-Wish events, and on Instagram (@thefaruqui5). She was named a top doctor by Cincinnati Magazine in 2022, 2024, 2025, and 2026.
Rajshree Jadeja | she/her
Rajshree Jadeja is an accomplished Corporate Relocation professional, client mobility advisor, and deeply dedicated community and healthcare advocate based in the Greater Seattle Area. As a prominent champion for patient-centered diagnostic and clinical discovery, Rajshree actively translates her family's personal journey into widespread systemic change. Within the UDNF, she serves on the PEER Council, spearheads patient-led community panels, and guides families working through complex diagnostic uncertainties. Her impact extends to federal policy; she has driven legislative outreach on Capitol Hill, which recently culminated in the introduction of a congressional resolution officially recognizing Undiagnosed Month. In addition to her healthcare mission, Rajshree is a prominent civic voice in Western Washington, demanding civic accountability while advocating heavily for public health safety and responsible energy development. She previously served as President of the Seattle Children's Hospital Rheumatology Research Guild.
Tom Kelly | he/him
Founder, UnitedHealth Group Special Needs Initiative
Recently retired, Tom spent 13 years at UnitedHealth Group where he was V.P. of Marketing and Innovation. While at UHG, Tom focused on improving the consumer experience in health care, with particular emphasis on children with complex/special health care needs. His work eventually became the UnitedHealth Group Special Needs Initiative (SNI), a team of over 400 people dedicated to improving the health care experiences for families with children with special health care needs. As a father of a child with an ultra-rare genetic disorder, Tom has over 16 years experience studying the impact rare diseases have on children and their families.
Kelly Kemper | she/her
With a deep personal connection to the rare and undiagnosed disease community, Kelly Kemper joined the Board of Directors of the Undiagnosed Diseases Network Foundation (UDNF) driven by a parent’s unwavering commitment to advocacy. Her journey began when her son, a collegiate athlete, returned home facing symptoms of an undiagnosed neuromuscular condition. Turning personal challenge into systemic purpose, Kelly brings a rich breadth of nonprofit leadership to the foundation, having previously served on boards spanning the arts, environmental conservation, and education. Across both the UDNF Board of Directors and the PEER Board, her most meaningful contribution has been cultivating a strong, connected community for this unique population—growing community councils to welcome new families, build peer support networks, and develop vital resources for those navigating the unknown. Kelly uses her voice to drive public awareness and advocates to secure funding on Capitol Hill. Her vision is for UDNF to be a welcoming home where patients, caregivers, providers, and researchers can connect and navigate the diagnostic odyssey together. Through her board experience and advocacy, she remains dedicated to shortening the path to answers. She is committed to ensuring no family faces the undiagnosed journey alone.
Tania Simoncelli | she/her
Vice President of Science in Society, Chan Zuckerberg Initiative (CZI)
Tania Simoncelli is Vice President of Science in Society at the Chan Zuckerberg Initiative (CZI). She joined CZI in 2017 with a vision to build a program committed to centering patients in the biomedical research ecosystem. In 2019, she launched the Rare As One Project, a first-of-its-kind program that supports patient communities in their quest to accelerate research through grantmaking, capacity building support, and the development of tools and partnerships. Her commitment to this work is grounded in twenty years of experience in science policy and advocacy, previously serving as Assistant Director of Forensic Science and Biomedical Innovation at the White House Office of Science and Technology Policy; Special Assistant to Commissioner Margaret Hamburg at the U.S. Food and Drug Administration; and Science Advisor to the American Civil Liberties Union. Simoncelli holds a B.A. in Biology and Society from Cornell University and an M.S. in Energy and Resources from UC Berkeley. In 2013, she was named by the journal Nature as “one of 10 people who mattered” for her work in spearheading the ACLU’s successful Supreme Court case challenging the patenting of human genes. In 2021, she was elected to the rank of AAAS Fellow.
Stephan Zuchner | he/him
Professor of Human Genetics and Neurology, University of Miami
Stephan Zuchner, M.D., Ph.D., is a highly accomplished Professor of Human Genetics and Neurology at the University of Miami Miller School of Medicine. He holds a degree from the University RWTH Aachen, Germany and an honorary doctoral degree from the Semmelweis Medical School in Budapest. His research focuses on identifying strong genetic variation associated with disease, particularly in the area of rare diseases. He has been involved in the discovery of several dozen disease genes that are now part of routine clinical genetic testing. He is also a leader in ClinGen, and holds pro bono board and advisory roles in various organizations such as Peripheral Nerve Society, The Genesis Project foundation, CMT Association, Hereditary Neuropathy Foundation, and the Muscular Dystrophy Association.
Meghan Halley, Emeritus Member | she/her
Senior Research Scholar, Center for Biomedical Ethics at Stanford University
Meghan Halley, PhD, MPH, is a Senior Research Scholar in the Center for Biomedical Ethics at Stanford University. She has a background in medical anthropology and health services research, with a focus on the intersection of ethics and economics in genomic technologies. Her current research includes the sustainability and governance of patient data and relationships in large clinical genomic studies, perception of value in genome sequencing for rare disease diagnosis and developing new measures for patient-centered outcomes in pediatric rare diseases.