ABOUT Us

Meagan is an ADTKD-UMOD patient and the recipient of a successful kidney transplant from her brother in 2016. She lives in Corpus Christi, Texas with her husband, Kevin and two teenagers. Meagan is an Army veteran and active-duty military spouse - as a result, she typically moves every 2-3 years and has had the privilege of living all over the United States and overseas. For the past 8 years, she has shared what she knows about ADTKD with each new nephrology team she is assigned to, with the goal of helping to spread the word and reach more people. In addition to volunteering with RKDF, she works full-time for a leadership development company.

Stephen is an ADTKD-MUC1 patient and a recipient of a successful kidney transplant from his wife, Sarah. He lives in New York with his wife and three children, having relocated from Scotland in 2018. Stephen is a Computer Science graduate of the University of Glasgow and works as a software engineer in the financial services sector. You can read Stephen’s patient story here.

Helene has been a member of the RKDF Leadership since Richard reached out to us to form a team. She is now on hemodialysis and doing very well. She has a planned transplant with a living donor in the fall of 2024. Her father passed on ADTKD UMOD to six of his seven children and Helene passed it on to her two sons. Helene’s father was a clinical research patient for hypertension in the 1970’s. Helene takes two of the meds he helped bring to the FDA and were approved. This is before the doctor’s discovered he had kidney disease. He had a transplant in 1994. We have such hope for a treatment for MUC 1 and UMOD. She feels honored to serve on RKDF. You can read more about her story here.

Suzanne is an ADTKD-UMOD patient and a ten-year transplant recipient. Every day she thanks her college friend Pam, from her hometown of Detroit, for her gift of life. She and her husband of over 50 years raised their two daughters in the Boston area and now live on the North Fork of Long Island. She is retired from her years as a Systems Administrator. Working with RKDF has given her the hope that perhaps a treatment may be found. You can read Suzanne’s patient story here.

Sharon has the ADTKD-MUC1 mutation – just like her mother, her mother’s mother, and numerous siblings, cousins, aunts, and uncles – and is currently on the transplant list. She brings over 30 years of experience as a social science researcher and author to her roles at the foundation. Sharon lives outside Washington DC with her husband, one of their two young adult sons, and their beloved dog. She is excited to be part of a team that is working with brilliant geneticists, biologists, and physician-researchers to find a treatment for ADTKD. You can read Sharon’s patient story here.

You can read Joe’s patient story here.

Mike has the ADTKD-MUC1 mutation – as did his late mother and grandmother, as well as several other members of his family. In his "day job," he leads a national education policy think tank. Mike lives in Bethesda, Maryland with his wife, two teenage sons, and a wonderful dog named Thunder. He is passionate about finding more people with ADTKD so that they too can benefit from a cure one day.

Susan has the ADTKD-UMOD mutation. After doing ancestry research she discovered that her grandmother, great-grandmother, and great uncle also succumbed to kidney disease likely due to having the UMOD gene mutation. She had a successful kidney transplant at UC San Francisco from a living donor in 2017 -- a complete stranger who saw her Facebook post! She has over 35 years of experience as a Qualitative and User Experience Research consultant; she currently volunteers at the RKDF as the Events Coordinator, hoping to spread the word about ADTKD and a possible therapy to halt the progression of ADTKD, among medical personnel and patients alike. After living in San Francisco for 40 years, Susan now lives outside Gainesville, Florida with her partner, Scott, her dog Chipper (who was born on her transplant day!) and her rescue cat Butter. You can read Sue’s patient story here.

Kathy is an ADTKD-UMOD patient and a recipient of a successful kidney transplant from her husband's uncle, Terry. She lives in New Jersey with her husband, Jim, and currently with two of her four adult children.  Kathy grew up in New Jersey and is a graduate of William Paterson University.  She is a certified elementary school teacher and has been working as a paralegal for a very busy law firm in New York State for the past 12 years. You can read more about her story here.

Anna Greka is a core institute member and Director of the Kidney Disease Initiative at the Broad Institute of MIT and Harvard, where she also serves on the institute’s Executive Leadership Team. She is also a professor at Harvard Medical School and a physician in the Department of Medicine at Mass General Brigham. In her laboratory, Greka leads a program aimed at dissecting fundamental mechanisms of disrupted cellular homeostasis in genetically defined kidney, metabolic, and degenerative diseases, with a special focus on membrane proteins. 

Leading multidisciplinary teams of scientists, Greka has uncovered opportunities to target convergent “nodal” biological pathways that underlie genetic diseases in unexpectedly diverse cell types and organs, for example in the kidney, the eye, and the brain. Many of these discoveries are making their way to clinical trials with promising results. To fully harness the power of nodal biology, Greka founded the Ladders to Cures (L2C) Accelerator, an ambitious new initiative whose goal is to catalyze progress across the research ecosystem and accelerate advances toward treatments and cures for patients with genetic diseases.

Her work has been widely recognized with many awards including a Presidential Early Career Award for Scientists and Engineers (PECASE) and the Seldin-Smith Award for Pioneering Research from the American Society for Clinical Investigation (ASCI). Greka was selected as a U.S. National Academy of Medicine Emerging Leader Scholar and she was elected to serve as ASCI’s president. Internationally recognized as a thought leader in biomedicine, Greka was a featured speaker at TED2023. Aiming to advance the translation of scientific discoveries into treatments for patients, Greka serves as founder, board member, and scientific advisor to several biotechnology companies.

Greka holds an A.B. in biology from Harvard University, an M.D. from the Harvard-MIT program in Health Sciences and Technology (HST), and a Ph.D. in neurobiology from Harvard Medical School.

Dr. Bleyer is Professor of Internal Medicine/Nephrology at Wake Forest School of Medicine. Dr. Bleyer is originally from Rhode Island. He attended Baylor College of Medicine and completed an internal medicine residency at Johns Hopkins and a fellowship in nephrology at the University of Pennsylvania. He then joined the faculty of Wake Forest School of Medicine, where he has been for over 30 years. Dr. Bleyer leads the Rare Inherited Kidney Disease Team at Wake Forest and is a clinical researcher who has helped to identify mutations in UMOD, MUC1, REN, and APOA4 as causes of inherited kidney disease. The mission statement of his team is “To help one patient, one family at a time.”

In 1995, Dr. Bleyer was referred a family with inherited kidney disease and gout from the mountains of North Carolina. Working with colleagues at Wake Forest, a mutation in the UMOD gene encoding uromodulin was identified as a cause of autosomal dominant tubulointerstitial kidney disease. Dr. Bleyer then began close collaborations with Dr. Stan Kmoch at the Charles University in Prague and was the lead clinical researcher in the identification of mutations in REN, SAA1, NDUFAF6, POLMRT, SEC61A1, and APOA4 as causes of inherited kidney disease. Work with Dr. Eric S. Lander at the Broad Institute at MIT and Harvard led to identification of mutations in MUC1 as a cause of ADTKD. By July 2024, the Rare Inherited Kidney Disease Team had identified just over 1,000 individuals in 400 families with UMOD mutations and approximately 940 individuals in 330 families with MUC1 mutations.

Peter C. Harris, Ph.D., is a consultant in the Division of Nephrology and Hypertension in the Department of Internal Medicine at Mayo Clinic in Rochester, Minnesota, with a joint appointment in the Department of Biochemistry and Molecular Biology, where he serves as vice chair. Dr. Harris is the Zell Director, Mayo Clinic Robert M. and Billie Kelley Pirnie Translational Polycystic Kidney Disease Center. He joined the staff of Mayo Clinic in 1999 and holds the academic rank of professor of medicine and professor of biochemistry and molecular biology, Mayo Clinic College of Medicine and Science. Dr. Harris is recognized with the distinction of the Gordon H. and Violet Bartels Professorship in Cellular Biology.

Dr. Harris earned his B.Sc. in genetics at the University of East Anglia, Norwich, England, and his Ph.D. at the University of Glasgow, Glasgow, Scotland. He continued his training at Children’s Hospital in Boston, where he completed a research fellowship, and at Harvard Medical School, where he completed a research fellowship in pediatrics. He subsequently completed a research fellowship in molecular medicine before rising to the rank of professor at the University of Oxford, England in 1999.

Dr. Harris’ research laboratory focuses on genetic diseases of the kidney, especially polycystic kidney diseases (PKD). PKD constitutes a range of inherited disorders that often result in renal failure and even death. His laboratory employs a range of genetic and cell biological approaches to understand the etiology and pathogenesis of these disorders. Dr. Harris' research group previously identified the major gene for the common autosomal dominant PKD (ADPKD) and the gene for autosomal recessive PKD (ARPKD). More recently, they identified two genes for the syndromic PKD, Meckel syndrome (MKS), and three minor ADPKD-like genes. Dr. Harris' research is funded by the National Institute of Diabetes and Digestive and Kidney Diseases and Department of Defense. In recognition of his achievements, in 2003 he received the inaugural Lillian Jean Kaplan Prize for Advancement in the Understanding of PKD and in 2008 the Homer Smith Award from the American Society of Nephrology.

Dr. Harris is frequently invited to give presentations both nationally and internationally and has authored more than 350 journal articles. He serves on the editorial board of the Journal of the American Society of Nephrology and Kidney International, and he has served as reviewer for multiple prominent scientific publications.

In addition to his research activities, Dr. Harris is a dedicated educator, including providing mentorship to numerous summer students, doctoral students, postdoctoral fellows and other learners. He holds full faculty privileges in Biochemistry and Molecular Biology at Mayo Clinic Graduate School of Biomedical Sciences.

Mr. Conway is the Chair of Policy & Global Affairs, and a past president, for the American Association of Kidney Patients (AAKP), the largest kidney patient organization in the USA.  Mr. Conway is a founder and Co-Chair of the Annual Global Summit on Kidney Disease Innovations, a partnership of AAKP and the George Washington University School of Medicine and Health Sciences that, since 2019, has engaged patients, professionals, and industry in over 90 countries.  As an advocate, he has advanced the principles of patient consumer care choice, patient-centered medicine, and continued patient participation in the workforce before federal and state governments and, globally, before the United Nations, the European Parliament, and the World Health Organization. He is a champion for greater use of patient insight data and real-world evidence in kidney research and innovations, including diagnostics, drugs, and devices.

As a patient, he has managed kidney disease for 42 years, including 3 years on home peritoneal dialysis and, for the past 25 years, with a kidney transplant. Mr. Conway received his transplant from a deceased donor in 1997, through the Medical College of Virginia/Virginia Commonwealth University (MCV/VCU) Hume-Lee Transplant Center in Richmond, Virginia.  His advocacy honors include both the American Society of Nephrology and the AAKP President’s Medal for policy work before the Congress and White House and, in 2022, he received the President’s Lifetime Achievement Award for volunteer service to the kidney community.

His professional career includes posts under 4 presidents, 3 Commonwealth of Virginia governors, and in support of 5 presidential transitions. His federal awards include the U.S. Department of Homeland Security (DHS) Secretary’s Silver Medal for exceptionally meritorious service to America. His previous federal posts include Chief of Staff, U.S. Department of Labor; Chief of Staff, U.S. Office of Personnel Management; Interim Federal Coordinator and Chief of Staff, Office of Gulf Coast Rebuilding, DHS; Special Assistant, White House Office of National Drug Control Policy; and, Confidential Assistant, U.S. Department of Education.  In Virginia, he has served as Deputy Secretary of Health & Human Resources and on the Secure Commonwealth Panel and the Board of Health Professions.

He represents the patient consumer perspective as a member of the American Board of Internal Medicine’s (ABIM) Nephrology Specialty Board, as Chair of the Food and Drug Administration’s Patient Engagement Advisory Committee, and as a Patient Editor of the Clinical Journal of the American Society of Nephrology (CJASN).  He also serves as a liaison to the Centers for Disease Control and Prevention (CDC) Health Infections Control Practices Advisory Committee (HICPAC), and on the boards of the Kidney Health Initiative, the U.S. Renal Data System, the Observational Study Monitoring Board for the NIH/NIDDK Kidney Precision Medicine Program and the Patient Advisory Board for the University of Washington’s Kidney Research Institute and Center for Dialysis Innovation.  Over the past decade, he has chaired multiple technical evaluation panels related to patient reported outcome measures and patient-driven quality measures for the Centers for Medicare and Medicaid Services (CMS) and has also been involved in patient-centered research initiatives with the U.S. Departments of Defense and Veterans Affairs.

Mr. Nelson received a successful kidney transplant 33 years ago. Since then, he has tirelessly advocated to accelerate finding  a treatment and cure for his family’s rare genetic kidney disease, now known as ADTKD (Autosomal Dominant Tubulointerstitial Kidney Disease). Richard founded the Rare Kidney Disease Foundation (RKDF) in 2018 to expand awareness to find the estimated tens of thousands of undiagnosed patients in the U.S., build a strong patient and medical team community, and advocate for ADTKD patients and families.

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. In 2008, Richard played a significant role in passing the Genetic Information Nondiscrimination Act (GINA) in Congress. He has an MBA from Northwestern University and has served on twenty for-profit and non-profit boards, including the national Board of the PKD Foundation. 

Richard lives in Salt Lake City, Utah, with his wife Karen. They are the parents of five terrific children and have seven grandchildren. You can read more about his story here. 

Katherine Blakeslee is the Head of Strategy and Operations at a biotech company dedicated to developing a transformative treatment for rare kidney disease, a field with significant unmet needs. With over a decade of expertise in strategic leadership and operational excellence, Katherine is known for turning visionary ideas into actionable strategies that drive innovation and impact. As a certified Project Management Professional (PMP), she has successfully navigated complex projects and budgets, always with a focus on advancing science and improving patient outcomes.

Katherine's career is highlighted by her impactful work at the Broad Institute of MIT and Harvard, where she played a pivotal role in aligning scientific objectives with strategic planning for major research initiatives, specifically in the rare kidney disease space. Her experience is further distinguished by her participation in the Leadership Education in Neurodevelopmental Disabilities (LEND) fellowship, reflecting her deep commitment to leadership and advocacy in the healthcare space.

Mr. Conway is the Chair of Policy & Global Affairs, and a past president, for the American Association of Kidney Patients (AAKP), the largest kidney patient organization in the USA.  Mr. Conway is a founder and Co-Chair of the Annual Global Summit on Kidney Disease Innovations, a partnership of AAKP and the George Washington University School of Medicine and Health Sciences that, since 2019, has engaged patients, professionals, and industry in over 90 countries.  As an advocate, he has advanced the principles of patient consumer care choice, patient-centered medicine, and continued patient participation in the workforce before federal and state governments and, globally, before the United Nations, the European Parliament, and the World Health Organization. He is a champion for greater use of patient insight data and real-world evidence in kidney research and innovations, including diagnostics, drugs, and devicesAs a patient, he has managed kidney disease for 42 years, including 3 years on home peritoneal dialysis and, for the past 25 years, with a kidney transplant. Mr. Conway received his transplant from a deceased donor in 1997, through the Medical College of Virginia/Virginia Commonwealth University (MCV/VCU) Hume-Lee Transplant Center in Richmond, Virginia.  His advocacy honors include both the American Society of Nephrology and the AAKP President’s Medal for policy work before the Congress and White House and, in 2022, he received the President’s Lifetime Achievement Award for volunteer service to the kidney communityHis professional career includes posts under 4 presidents, 3 Commonwealth of Virginia governors, and in support of 5 presidential transitions. His federal awards include the U.S. Department of Homeland Security (DHS) Secretary’s Silver Medal for exceptionally meritorious service to America. His previous federal posts include Chief of Staff, U.S. Department of Labor; Chief of Staff, U.S. Office of Personnel Management; Interim Federal Coordinator and Chief of Staff, Office of Gulf Coast Rebuilding, DHS; Special Assistant, White House Office of National Drug Control Policy; and, Confidential Assistant, U.S. Department of Education.  In Virginia, he has served as Deputy Secretary of Health & Human Resources and on the Secure Commonwealth Panel and the Board of Health Professions.

He represents the patient consumer perspective as a member of the American Board of Internal Medicine’s (ABIM) Nephrology Specialty Board, as Chair of the Food and Drug Administration’s Patient Engagement Advisory Committee, and as a Patient Editor of the Clinical Journal of the American Society of Nephrology (CJASN).  He also serves as a liaison to the Centers for Disease Control and Prevention (CDC) Health Infections Control Practices Advisory Committee (HICPAC), and on the boards of the Kidney Health Initiative, the U.S. Renal Data System, the Observational Study Monitoring Board for the NIH/NIDDK Kidney Precision Medicine Program and the Patient Advisory Board for the University of Washington’s Kidney Research Institute and Center for Dialysis Innovation.  Over the past decade, he has chaired multiple technical evaluation panels related to patient reported outcome measures and patient-driven quality measures for the Centers for Medicare and Medicaid Services (CMS) and has also been involved in patient-centered research initiatives with the U.S. Departments of Defense and Veterans Affairs.

Helene has been a member of the RKDF Leadership since Richard reached out to us to form a team. She is now on hemodialysis and doing very well. She has a planned transplant with a living donor in the fall of 2024. Her father passed on ADTKD UMOD to six of his seven children and Helene passed it on to her two sons. Helene’s father was a clinical research patient for hypertension in the 1970’s. Helene takes two of the meds he helped bring to the FDA and were approved. This is before the doctor’s discovered he had kidney disease. He had a transplant in 1994. We have such hope for a treatment for MUC 1 and UMOD. She feels honored to serve on RKDF. You can read more about her story here.

His father’s ADTKD-MUC1 inspired Cameron to pursue a career in medicine and to become involved with the Foundation. He is a pediatric anesthesiologist at Primary Children’s Hospital in Salt Lake City and currently resides in Holladay, Utah. He received a master’s in public health from the University of Utah and a medical degree from George Washington University School of Medicine. Cameron speaks Spanish.

He met his wife Ashley as a first-year medical student and they are the parents of six rambunctious children ages 13 to 2. If Cameron has a spare minute you can find him skiing the slopes of Alta during the winter with his kids or biking up Little Cottonwood Canyon to Alta in the summer.