OUR BACKGROUND
The Rare Kidney Disease Foundation was established in 2018 to be the patient voice for ADTKD research. In September 2020, the Foundation was tasked with leading a Patient Engagement Working Group as part of the broader ADTKD research coalition.
Since that time, a small volunteer group has been organized to move the effort forward. In our mission for a treatment and cure for ADTKD, our goals are threefold:
Advocate Effectively: Provide the patient voice in research and policy. promote policy that enables development and access to treatments for rare kidney diseases.
Build Community: Be the go-to resource for families for information, support, and fellowship regarding rare kidney disease; define opportunities to help and donate.
Increase Awareness: Build awareness of rare kidney diseases among kidney disease patients, the medical/nephrology community, and the broader kidney community.
OUR LEADERSHIP TEAM
Board of Directors
Richard R. Nelson, Chairman and CO-founder
Richard Nelson received a successful kidney transplant 32 years ago. Since then, he has tirelessly advocated to find 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 over twenty boards, including the Board of the PKD Foundation.
Richard lives in Salt Lake City, Utah, with his wife Karen. They are the parents of five children and have seven grandchildren.
Katie Reed, TRUSTEE
Katie is an ADTKD patient and a recent recipient of a successful kidney transplant. She is completely committed to the Foundation’s mission and finding a treatment and cure for the next generation. Katie and her husband, TJ, are parents to two young children. In their free time, you can find the Reeds out and about at local parks, watching a thrilling game of preschool-aged soccer, cheering for the Steelers, or taking over Disney World in matching family shirts. Katie also serves on the Kidney Action Committee for the National Kidney Foundation.
Professionally, Katie is a Senior Director with Afton Partners, a consultancy focused on funding policy, governance, and sustainability strategies for education and human services organizations. She earned an MBA from the University of Michigan Ross School of Business, and a BBA in finance from the University of Notre Dame.
BILL REIFF, TRUSTEE
Bill is a kidney transplant recipient who works very closely with the Rare Kidney Disease Foundation. He is extremely passionate about the foundation’s mission. Examples of Bill’s passion include advocating for the living donor act and organizing educational programs on transplants. Separately, Bill sits on the board of directors for the Kidney Foundation of OHIO. The KFO provides a broad-based program of direct assistance to those with kidney disease while promoting and providing educational programming for the public, renal professionals, patients, and their families. Bill is a spirited Pittsburgh sports fan and spends his free time with his family, friends and hiking. Professionally, Bill serves as Vice President, Global Trade Credit and Order to Cash for Eaton Corporation. In this role, Bill is responsible for all facets of the receivable management process including insolvency. Bill is a graduate of Kent State University with a major in criminal justice and obtained his MBA from Cleveland State University.
Michele brouse, EXECUTIVE DIRECTOR and TRUSTEE
Michele Brouse, MHA, CMP, CASE has diverse work experiences in both the non-profit and private sectors. Michele began her career in association management in 2000 at SmithBucklin in Chicago. In 2004 as a Coordinator for Trade Shows at the National Automatic Merchandising Association. In 2008 she moved to CompuSystems as Director of Client Relations, where she was responsible for managing a portfolio of business which provided innovative event registration, management, and lead capture solutions to help associations create engaging events worldwide. In 2011, she joined HIMSS (Healthcare Information Management Systems Society) as Manager of Distance Education, Manager of Registration Services, and Director of Client Services. In 2013, she transitioned to working part-time at HIMSS Media as Manager of Events. After some time off to raise her children, Michele joined Ventana Research in 2021 as part of the Client Success team and came to the RKDF part-time in July 2023.
Michele Brouse has an educational background that spans from 1996 to 2008. Michele attended Purdue University, where she earned a Bachelor of Science (BS) in Hospitality Administration/Management in 2000. Michele then attended the University of Nevada-Las Vegas, where she earned a Master of Hospitality Administration.
Cameron Nelson, Trustee
His father’s ADTKD 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 Masters 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 five rambunctious children ages 10 to 1. 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.
FOUNDATION APPOINTED MEMBERS
SUZANNE KELLY, Secretary
JON WONNELL, treasurer
leadership team
STEPHEN HAYTON, WEBSITE DEVELOPMENT
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 more about his story here
Emily naasz, operations
meagan consedine, grants
kathy stankus, RKDF biographer & donations MANAGER
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.
sue reale, EVENTS
HELENE HUGHES, historian
OUR PARTNERS
Collaboration is why we exist as a Foundation. The Rare Kidney Disease Foundation works alongside the Broad Institute of MIT & Harvard, Wake Forest School of Medicine, and the American Association of Kidney Patients.
We also have partnerships with the American Society of Nephrology (ASN), PKD Foundation and the Mayo Clinic.
If you would like to partner with us, we would love to hear from you.