Chief Executive Officer (CEO)
Amy leads the Undiagnosed Diseases Network Foundation (UDNF) with more than two decades of extensive fundraising, operations, and patient advocacy experience shaped by her previous roles working with four national non-profit voluntary health organizations. As CEO, Amy's role is to work with the board and staff to improve access to diagnosis, research, and care for all individuals with undiagnosed and ultra-rare conditions. Prior to joining the UDNF, Amy was the CEO of the Charcot-Marie-Tooth Association. She has also held leadership roles at the Parkinson's Foundation, Crohn's and Colitis Foundation, and the Muscular Dystrophy Association. Amy is a graduate of St. Cloud State University in Minnesota and lives in South Florida with her husband and children.
Michele Herndon, MSN, RN, is the Program Director of the UDNF’s Patient Navigation Program. For the past two decades, she has served as a pediatric nurse, leader, and manager in an academic hospital setting. Michele is also the mother to Mitchell who enrolled in the UDN in 2017 after five years of symptoms. After genetic sequencing and a model organism study using fruit flies, his gene mutation was identified by the UDN. Mitchell died in 2019 from the ultra-rare disease that was ultimately named after him, Mitchell Syndrome. Michele and her family started the Mitchell & Friends Foundation to support families and raise both awareness and money for research into Mitchell Syndrome. Michele lives in St. Louis, MO and is currently working to complete her Doctorate in Nursing Practice at the University of Missouri-Columbia.
Christin Siscoe, MSN, RN, CPN, a Patient Navigator with the UDNF, has 18 years of nursing experience as a pediatric nurse, educator, and administrator. She has obtained numerous national certifications and awards for her compassionate care, innovative leadership style, and profound advocacy work. Christin also participates in healthcare mission trips to Bonao in the Dominican Republic where she provides free ENT surgeries yearly. She currently resides in Rayville, Louisiana with her sons, Ayden and Cooper, and niece Elaina. Cooper is a UDN patient and attended the DUKE site, where he was given a partial diagnosis of hereditary pancreatitis. Cooper and Christin still await his rare autoimmune/autoinflammatory diagnosis. Through Christin’s involvement with the UDN as a PEER Member, she dreamed of the day she could combine her advocacy work and nursing experience into a full-time job. With her recent move to a rural area in Louisiana, she is passionate about making sure all participants are well-served equitably.
Meet Dana, your dedicated Patient Navigator at UDNF. With nearly a decade of experience in Law Enforcement, Dana has seamlessly transitioned her passion for serving the community into the healthcare realm. Over the past few years, she has devoted herself to guiding patients through the intricate healthcare system, ensuring a smooth journey throughout their continuum of care. Fluent in Spanish, Dana brings empathy and understanding to her role, ensuring all patients feel heard and supported. Drawing from a deeply personal commitment, Dana has played a pivotal role in helping a dear friend navigate through her own undiagnosed disease over the past decade. This firsthand experience fuels Dana's empathy and understanding, making her not just a navigator but a compassionate advocate for those seeking answers. With Dana by your side, you're not just navigating; you're empowered.
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.
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.
President, Wilhelm Foundation
Co-founder, Undiagnosed Diseases Network International
Helene Cederroth is the President of the Wilhelm Foundation and Co-founder of Undiagnosed Diseases Network International. She is a dedicated advocate for individuals and families affected by rare and undiagnosed diseases. Her passion for this cause is personal as she lost three children to a degenerative undiagnosed disease. In response to this tragedy, she founded the Wilhelm Foundation, which works to improve the lives of those affected by rare and undiagnosed diseases through research, education, and support. She is also a Co-founder and Board Member of UDNI and co-founder of International Conferences on Rare and Undiagnosed Diseases. The Wilhelm Foundation also runs the Champion Initiative. Helene's commitment to this cause is unwavering and her leadership and expertise are valuable assets to the community.
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.
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.
Vice President Medical and Regulatory Affairs, Alltrna
Anne Pariser is a seasoned professional with over 20 years of experience in the field of rare disease research. She currently holds the position of VP of Medical and Regulatory Affairs at Alltrna, a biotech company. She served as the Director of the Office of Rare Diseases Research at NIH and spent over 16 years at the FDA Center for Drug Evaluation and Research working on rare genetic diseases. She is an expert in authoring papers, participating in work groups, committees, boards, and foundations aimed at accelerating the development of therapeutics for rare disease patients.
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.
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.
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.
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.
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.
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.
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.
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.