The terms used in the patient-facing side of nephrology are changing, in sometimes controversial ways. A clinical practice session on this topic will feature the Celeste Castillo Lee Memorial Lectureship, “Make It Plain: The Patient Perspective on CKD Terminology,” on Saturday, November 6.
The speaker will be Glenda V. Roberts, a long-term kidney patient who is director of external relations and patient engagement at the Center for Dialysis Innovation and the Kidney Research Institute at the University of Washington. Prior to joining the university, Ms. Roberts spent 35 years as an information technology executive.
Based on her personal experience with kidney disease, Ms. Roberts is a passionate activist for kidney research and patients living with kidney disease. She managed the progression of her disease via diet and exercise for more than 40 years before going on dialysis. Since receiving a kidney transplant in 2010, she has completed eight half-marathons.
Refusing to accept limitations, she enjoyed a fulfilling career, evolving from a software developer to a senior business executive managing multi-million dollar business units for large corporations, including General Electric, Microsoft, and Johnson & Johnson.
For 10 years, she was CEO of OUI Works, a nonprofit providing education, advocacy, and resources to increase organ donation, kidney disease awareness, and assistance for recipients and donors burdened by out-of-pocket transplant-related expenses. For two years, she was executive director of Transplant House, a nonprofit that provides a home away from home for transplant patients and their families who need affordable, extended-stay housing close to hospitals in Seattle.
Ms. Roberts has been involved in myriad patient-centered national and international initiatives focused on addressing patient preferences and improving outcomes. She was recently named to the Kidney Health Initiative (KHI) Patient and Family Partnership Council. KHI is a public-private partnership between ASN and the US Food and Drug Administration to foster the development of new products to improve the lives of people living with kidney diseases.
She was the second patient appointed to serve on the international research advisory committee of the Canadian Can-SOLVE CKD Network.
In addition to serving on advisory boards of the Center for Dialysis Innovation, Kidney Research Institute, and Home Dialyzors United, Ms. Robert brings the patient voice to a number of National Institutes of Health and industry research efforts. She is also involved with the Center for Dialysis Innovation as a member of the leadership team, the port research and development project, and the human factors working group.