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.
Meghan Halley, Board Chair | 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.
Sika Dunyoh, Vice Chair | 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.
F. Sessions Cole, Secretary | 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.
Anne Pariser | she/her
Chair of the Regulatory Science Committee | International Rare Diseases Research Consortium
Anne Pariser, MD, has over 20 years of experience in rare disease research, including roles at the NIH, FDA and Biotech. She is an expert in advancing therapeutics for rare diseases through research, collaboration, and policy development. She is currently the Chair of the Regulatory Science Committee, for the International Rare Diseases Research Consortium.
Effie Parks | she/her
Host, Once Upon a Gene Podcast
Rare Disease Community Influencer/Advocate/Storyteller
Effie is a passionate advocate for individuals and families affected by rare genetic conditions. She began her advocacy journey when her child was diagnosed with CTNNB1 syndrome, a rare genetic condition. She now hosts her own podcast, "Once Upon a Gene," where she shares the stories and experiences of others in the rare disease community. Her mission is to educate, amplify the voices of the community, connect people to resources, and to make a positive impact on the lives of those affected by rare diseases.
Gerald Sweeney | he/him
Retired Litigation Attorney
Gerald Sweeney is a retired litigation attorney with over four decades of experience in legal practice. He is a former board member of the Cystic Fibrosis Foundation and a former Director of both a NYSE traded entertainment company and a closely held entertainment company. He has also participated in the Undiagnosed Diseases Network (UDN) program. Gerald's extensive experience in legal practice, as well as his involvement in the fields of entertainment and advocacy for individuals with cystic fibrosis, make him a valuable addition to any board.
Jessica Swanson | she/her
UDNF PEER Co-Chair
Jessica Swanson is the founder and CEO of Summit Health Services Inc., specializing in Applied Behavior Analysis (ABA) with 20 U.S. locations. A Board Certified Behavior Analyst (BCBA), she also serves on the board of QABA and leads Redpoint Consulting Inc., advising start-ups and Pathfinder Health. As co-chair of UDNF PEER, she advocates for individuals with rare diseases. Jessica is married to an active-duty officer, has two children, and lives in Huntsville, Alabama.
Kelly Cervantes | 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.
Liliana Fernandez | she/her
Medical Monitor, Premier Research
Liliana Fernandez is a highly experienced medical professional with 20 years of research experience in academia and 2 years of experience in industry. She has spent the last 7 years focusing on undiagnosed and rare diseases. She has worked as a clinical research coordinator and genetic curator at the Stanford Center for Undiagnosed Diseases for 6.5 years, where she developed an alternate workflow to facilitate the participation of the Hispanic population in the program. She is currently a medical monitor in gene therapy clinical trials for rare diseases.
Parvathy Krishnan | she/her
Chief Executive Officer, Krishnan Family Foundation
Parvathy Krishnan is the CEO and founder of the Krishnan Family Foundation, a healthcare advocacy organization. She became an advocate and awareness raiser after her two children were diagnosed with multiple ultra and nano rare genetic conditions. She is a passionate and experienced speaker and has spoken at various conferences, workshops, and events, engaging stakeholders across the rare disease landscape. She serves on advisory councils as a leader across various institutions and organizations around the world. Parvathy has a Master's in Clinical Nutrition and professional experience as a Nutrition Support Dietitian, bringing a unique blend of experience to her work in rare disease advocacy. She lives in North Carolina.
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.
Stephanie Tomlinson | she/her
UDNF PEER Co-Chair
Stephanie Tomlinson has advocated for her son and others like him for over 20 years. She has been certified in the program Partners in Policymaking and seated on numerous committees surrounding early childhood special education and early detection. Recently, Stephanie was the Patient Support Coordinator for MitoAction. As the first call for help, Stephanie answered calls from patients, caregivers, and care providers looking for support and resources regarding Mitochondrial Disease. She hosts a bi-weekly podcast, Energy in Action, which focuses on the storytelling of patients with rare diseases, and experts in the field discussing their research. She is passionate about people having a voice in their care and strongly urges people to use their voices. It is the experience of those who are battling the disease that holds the answers to treatment.
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.
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.
Advisors
Max Bronstein, Senior Advisor to the Board of Directors | he/him
Executive Director, Government Affairs & Patient Advocacy at Critics Pharmaceuticals Before joining the White House, Max was the Senior Director of Health Policy & Corporate Affairs at Audentes Therapeutics, a gene therapy company, where he led company interactions with state and federal policymakers, while driving various coalitions to advance patient-focused policies for gene therapy and regenerative medicine. In particular, Max was a leader of legislative efforts to promote payment model innovation for gene therapy products as well as ensure the strongest possible standards in the US for diagnosis of rare diseases. Previously, Max was the Chief Advocacy & Science Policy Officer at the EveryLife Foundation for Rare Diseases where he led the Foundation’s policy initiatives to close the innovation gap for rare diseases and to enhance newborn screening in America. In 2016, the EveryLife Foundation successfully advocated for the passage of the 21st Century Cures Act and played a key role in advocating for newborn screening legislation in California and Florida to help babies with rare diseases. Max has also published in STAT, Pediatrics, Forbes, Nature, and the New England Journal of Medicine on topics like patient engagement in drug development and the importance of leveraging incentives for closing the innovation gap for rare diseases. He is the former Director of Science Policy at Research!America where he advocated for increased appropriations for critical health research agencies like the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). Max has held various positions in the U.S. government, including at the National Science Foundation, the U.S. House Committee on Science & Technology, and the National Institutes of Health. In 2010, Max founded a non-profit organization, the Journal of Science Policy & Governance, to empower students and young scholars to publish policy-relevant scholarship and provide authors with a voice in the policy-making process. 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. When not tormenting Members of Congress, he enjoys hiking around the San Francisco Bay Area and is an avid sailor, swimmer, and diver.
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), improving patient access to precision diagnostics like genomic sequencing, and ensuring a robust and inclusive workforce for the biotechnology and biomanufacturing sectors.