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Agenda

Welcome
Anna Greka, institute member and director of the Kidney Disease Initiative at Ó³»­´«Ã½, director of Center for Kidney Disease and Novel Experimental Therapeutics (Kidney-NExT) at BWH, assistant professor of medicine at HMS

Impacting rare disease awareness and advocacy through art
Meryl N. Fink, Esq., president and executive director, The Progeria Research Foundation
Introduction by Patricia Weltin, chief executive officer, Rare Disease United Foundation and founder of Beyond the Diagnosis art exhibit

Precision medicine for FSGS: TRPC5 inhibitors
Yiming Zhou, postdoctoral scholar, Greka Lab

Toward a treatment for MUC1-associated kidney disease
Moran Dvela Levitt, postdoctoral scholar, Greka Lab

Living with rare kidney disease: our family’s 30-year search for answers
Richard R. Nelson, patient advocate, change agent and community builder

Richard Nelson was diagnosed with end-stage renal disease and received a successful transplant 27 years ago. Since that time, he has tirelessly advocated to find a treatment and cure for his family’s rare genetic kidney disease, now known to be Mucien-1 Kidney Disease (MKD). Richard’s father died at age 43 of kidney failure, leaving behind a widow and six young children, four of whom eventually developed the same kidney disease as their father. Collectively, those four children have 21 children; ten carry the Mucien-1 gene mutation.

Professionally, Richard spent 18 years as CEO of the nationally recognized Utah Technology Council, creating a dynamic environment for the state’s 6,000+ tech companies to grow and thrive. He served on the Board of the PKD Foundation, and is the chair and co-founder of the Rare Kidney Disease Foundation which is actively recruiting patients for research. In 2008, Richard played a significant role in passing the Genetic Information Nondiscrimination Act (GINA) in Congress. He has an MBA from Northwestern University. Richard is dedicated to using his extensive experience to help find a cure for Mucien-1 Kidney Disease for the next generation. He lives in Salt Lake City, Utah, with his wife Karen. They are the parents of five children and have four grandchildren.