AAKP Member
Holladay, UT
Richard received a successful kidney transplant 34 years ago. Since then, he has tirelessly advocated finding a treatment to HALT his family’s rare genetic kidney disease (ADTKD-MUC1*). Sadly, this genetic disease has taken his father, a surgeon, at 43 with six children, and, recently, his angel sister and optimistic brother. Twenty-one of his nephews & nieces are at a 50/50 risk of kidney failure. He works closely with the Broad Institute of MIT and Harvard as an advocacy partner, and Dr. Anna Greka, with their promising compounds. Richard co-founded the Rare Kidney Disease Foundation (RKDF) in 2018 to: (1) Accelerate finding patients for a clinical trial by 2027-28 – from the estimated 75,000 to 100,000 undiagnosed patients in the U.S. — 30-40% are on dialysis; (2) To build a strong patient and medical community that supports taking a treatment to the FDA for approval; and (3) To advocate as the “ADTKD voice” for patients and families diagnosed with MUC1 & UMOD with over one million patients worldwide. It is the 2nd largest genetic kidney disease after PKD.
Richard’s professional journey is a testament to his unwavering commitment to driving vital causes forward. He 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. In 2008, Richard’s significant role in passing the Genetic Information Nondiscrimination Act (GINA) in Congress demonstrated his exceptional advocacy for connecting decision-makers and kidney patients. His influence extends to leadership on the national Board of the PKD Foundation. Recently, he has spearheaded RKDF’s alignment with AAKP, ASN, Mayo Clinic, and Natera. With an MBA in marketing from Northwestern University, a BS in finance from Brigham Young University, and experience from many non-profit and for-profit boards, Richard’s journey continues to be impactful and is still a work in progress. Richard lives in Salt Lake City, Utah, with his wife Karen; they are the parents of five children (one diagnosed with MUC1) and have nine grandchildren. He loves to ski and cycle for fun, for his health, and to spend time with friends. Please help Richard, and his dedicated RKDF volunteer team, on their mission to find patients who are not aware of why their kidneys failed, nor are their nephrologists aware, by following and sharing with your friends via: https://www.linkedin.com/in/rrnelson20.
