Utah RDAC Council Members

Pinar Bayrak-Toydemir

Council Member

Physician, Clinical Molecular Geneticist

ARUP Laboratories and University of Utah

Lorenzo Botto

Council Member

Physician, Medical Geneticist

University of Utah

Lorenzo is a clinician and epidemiologist, trained in medical genetics and public health. His clinical work focuses on the diagnosis and care of families with rare and undiagnosed conditions. Rare and undiagnosed individuals and families are many but are largely unseen and unheard. This community is stronger if it joins forces with providers and other stakeholders and speaks with one voice to policy makers.

Justine Case

Council Member

Advocate

Utah Rare Disease Advisory Council

Justine is a patient advocate and educator for complex and rare medical conditions; she and her family are impacted by multiple rare disorders. She serves as a grassroots and national community leader and works to ensure accuracy within the online groups she runs to assist her communities’ medical literacy and effective navigation of healthcare systems. Her experience spans from legislative advocacy to clinical work and health promotion, including helping to design population studies for disease-specific community and nonprofit groups.

Justine is committed to helping herself and others living with rare and complex conditions gain access to quality care and treatment. She was very fortunate to have a career that prepared her to thrive as a complex patient, and she works hard to share knowledge with her community.

Kira Chaney

Council Member

Advocate

Utah Rare Disease Advisory Council

Kira is a dedicated patient and political advocate specializing in rare disorders, driven by her own journey navigating healthcare systems as a rare disease patient. Her unique experience combined with an academic background in anthropology, integrative human biology, and an M.S. degree in healthcare administration provide her with a comprehensive understanding of the complex social and medical issues faced by rare disease patients. She is devoted to innovation and the removal of systemic barriers to the diagnosis and treatment of rare disorders.

She is a rare patient and rare advocate looking for ways to help her communities.

Ronald (Ron) Day

Council Member

Physician, Pediatric Cardiologist

University of Utah

Steve Eliason

Council Member

Utah State Representative

Huntsman Mental Health Institute at the University of Utah

Representative Steve Eliason has served in the Utah House of Representatives since 2011. He represents House District 44. Steve resides in Sandy City with his wife and is the father of six children, including a daughter with a rare condition. He has served as the Chair of the House Revenue and Taxation Committee and is currently the House Chair of the Public Education Appropriations Committee. He serves on the House Health & Human Services Committee and Co-Chaired the Governor’s Youth Suicide Prevention Taskforce with the current Governor of Utah, Spencer Cox.

Rep. Eliason has passed over 100 bills during his tenure in the Legislature on topics ranging from election reform, public safety, education, public health, tax reform and has passed over 50 bills relating to suicide prevention and improving the lives of people with a mental illness.

Rep. Eliason has been recognized for his leadership by numerous organizations for his work on issues important to Utah Citizens, including:

Outstanding Legislator Award – Utah Association of Public Health Boards

Mental Health Champion Legislative Award – Mental Health America

Public Health Hero – Utah Public Health Association

Allies in Action Award – American Foundation for Suicide Prevention

Distinguished Service to Healthcare Award – Utah Hospital Association

Marian Furst

Council Member

Retired Patent and Trademark Attorney

Utah Rare Disease Advisory Council

Marian is a retired patent attorney, a second career she adopted after working in the oil and gas industry. She earned a bachelor’s degree in chemistry, a master’s degree in inorganic chemistry, a PhD in Geochemistry, and a law degree. She is also a patient with three diagnosed rare diseases, the most significant of which is a genetic immune deficiency. As a volunteer for the Immune Deficiency Foundation, she became aware of many issues faced by the primary immune deficiency community and the broader rare disease community. Through the Immune Deficiency Foundation, she discovered a passion for advocacy about these issues.

She has a desire to use her advocacy skills and experience to help the rare and undiagnosed community.

Januel Gomez Colon

Council Member

Rare Disease Patient Advocate

Utah Rare Disease Advisory Council

Januel is a recent graduate of the University of Utah, where he studied economics and analytics and was inducted into the Beehive Honor Society for his leadership and service. Born with Spinal Muscular Atrophy, Januel has been part of the healthcare system since childhood through his involvement in clinical trials and research. He is also a former world champion in Tetraski, an adaptive ski system for individuals with complex disabilities. Today, he serves as an advocate focused on advancing equity and access for individuals with rare and undiagnosed conditions. He brings lived experience and data-driven insight to efforts aimed at improving outcomes across Utah’s rare disease community.

He wants to help make Utah a better place for people with rare and undiagnosed conditions by removing the barriers they face through advocacy and informed policy.

Catherine (Cate) Levy

Council Member

Clinical Genetic Counselor

University of Utah

Cate is a genetic counselor at Huntsman Cancer Institute. She received her bachelor’s degree is neuroscience from the University of Colorado Boulder and master’s degree in human genetics and genetic counseling from Keck Graduate Institute. Her focus is hematologic malignancies in both adult and pediatric populations. She also participates in ongoing research at HCI.

Cate became interested in rare disease advocacy through volunteer work with an adaptive recreation program and now hopes to help make a difference for rare disease patients and families here in Utah. 

Matthew Pearl

Council Member

Rare Disease Patient Advocate

Utah Rare Disease Advisory Council

Matthew is an individual with Fanconi Anemia and a patient advocate. He serves in various capacities on several nonprofits including: the National Ability Center in Park City, Utah. He is on both the Utah Rare Disease Advisory Council (RDAC) and The Professional Ski Instructors of America – American Association of Snowboard Instructors Intermountain Board of Directors. Matthew studied nonprofit leadership consulting and psychology at Westminster College in Missouri and is a native of St. Louis. Matthew is a patient leader in the Fanconi Anemia community.

His sister also has a rare disease, and he wants to help as many people as he can before he dies.

Ava Szajnuk

Council Member

Rare Disease Patient Advocate

Rare and Undiagnosed Network (RUN)

Ava Szajnuk (Zanik) is a student at Skyline High School in Salt Lake City, Utah. She was born a healthy child and hit all her milestones early. An arachnoid cyst was identified when she was three years old. When Ava was five years old, she was told she had an undiagnosed genetic dysfunction, an undiagnosed autonomic neuropathy and many more syndromes. In 2013, Ava went on to have four cranial surgeries due to a subdural hygroma and is now shunt dependent. Ava continues to search for answers for the root cause of her disease processes. She has two siblings and a mother who all have an undiagnosed rare disease. Ava is on the Advisory Board for the Rare and Undiagnosed Network (RUN). She has spoken publicly at the Utah State Capitol as well as at University of Utah Health to freshman classes of medical students. She is a patient, a caregiver and an advocate. Although Ava’s disease process has hindered many of her physical abilities, it has given her the opportunity to see life through a more empathetic lens. Ava is talented at writing, singing, and drawing. She is a member of the Skyline Varsity Congressional Debate team and competes at a national level. Ava aspires to have a career as a public policy analyst with a focus in healthcare policy, and to one day influence the policy that will directly affect the people in her community.

Her passion for advocacy led her passion for public policy. She wants to learn about and help influence the policies that affect the rare disease community because rare disease patients deserve compassion and fair representation.

David Viskochil

Council Member

Physician, Medical Geneticist

University of Utah

Dave is Professor of Pediatrics and director of the Neurofibromatosis Clinic at the University of Utah. He received his bachelor’s degree in biology from the University of Arizona and his doctorate in biochemistry and medical degree from the University of North Carolina. He completed his residency and clinical genetics fellowship at the University of Utah Affiliated Hospitals. His medical genetics training at the University of Utah was mentored by Dr. John Carey and Dr. Ray White. Dr. Viskochil has focused his research in the molecular genetics of neurofibromatosis type 1 (NF1) and is now working on the clinical aspects of NF1, including clinical trials. He was the recipient of a Young Investigator Award from the National Neurofibromatosis Foundation (now CTF; Children’s Tumor Foundation) in 1988. He is the director of the medical genetics training programs and serves as the medical director of the UUGPGC. He is on the advocacy and legislative affairs committee of the American College of Medical Genetics (ACMG) and serves as the chair of the Utah Newborn Screening Program. He is also a member of the executive committees of the Penelope Program, Center for Genomic Medicine, and the Utah Prader-Willi Syndrome Clinic.

Dave hopes to decrease the diagnostic odyssey, educate and counsel families with rare conditions, and provide interventions when appropriate.

Tanner Withers

Council Member

Disability and Special Needs Planner

Albility Planning

Tanner was born and raised in Lehi, Utah, now calling Mapleton home. He is married to Maddie, who takes care of their children and runs a very successful permanent makeup business. They have two little girls, Florence and Halcyon. Halcyon was adopted from Colombia in the Fall of 2023. Halcyon, has a rare disease called Cornelia de Lange Syndrome. With a professional background in finance, and a personal connection to this community, Tanner founded a Disability & Special Needs Planning firm, called Albility Planning, focused on the financial, benefits, estate, and family support strategies.

A year ago, Tanner had never heard of the RDAC. Two years ago, he had never really heard about “rare diseases.” Today, as a parent of a sweet girl with a rare disease, and as a professional serving the rare disease, special needs, and disability community, he is starting to understand what it means to be an active advocate. Bringing awareness, and advocating for his daughter, and others like her is now just part of their lives–and the RDAC provides a larger voice.

Rebecca Yates

Council Member

Health Insurance Broker

Ark Insurance Solutions, LLC

Rebecca Yates brings over two decades of health insurance expertise to the Utah Rare Disease Advisory Council, where she serves as a passionate advocate for patients and families navigating rare and chronic conditions. As the owner of Ark Insurance Solutions, Rebecca has built her career around helping individuals access affordable, comprehensive healthcare coverage—particularly those often overlooked by traditional systems.

Her advocacy is deeply personal. After her youngest daughter was diagnosed with Ehlers-Danlos Syndrome, Autism, and Hemochromatosis, Rebecca quickly recognized the systemic barriers families face in securing adequate care and insurance support. This experience sparked her broader mission to improve access and equity in the healthcare landscape for the rare disease community.

Rebecca also serves on two Healthcare.gov committees and volunteers with the Utah All Copays Count Coalition, where she works to ensure patients benefit from available copay assistance and policy protections. Her expertise spans both individual and group health markets, making her a valuable bridge between technical insurance knowledge and real-world patient needs.

When she’s not working or advocating, Rebecca enjoys reading, traveling, and tackling home improvement projects. Her blend of professional experience and lived advocacy gives her a unique voice on the Council—one grounded in compassion, action, and a commitment to lasting change.

Sally Jo Zuspan

Council Member

Research Director

University of Utah

Sally Jo is a registered nurse by training but developed a passion for research. She has managed the Utah Data Coordinating Center for the past 20 years and has provided oversight for clinical research and clinical trials that impact patient care and health. She also oversees research activities for several rare and uncommon disease networks with researchers from around the country. She has expertise in data collection and analysis, grant development and clinical trial execution.

She thinks research and data are key areas to help discovery in rare disease areas and would like to contribute her expertise where needed.