A letter from Anne Campbell: My sad news is to let you know that another patient active on the national scene has passed away. Norma Knowles died last Thursday, March 27th, in Columbia, MO. She was 44. She had been ill for the past two years with multiple problems. She was very active in the NxStage Users Group, now Home Dialyzors United, with Rich Berkowitz, Kathe LeBeau and others.
I can’t begin to list all the things that Norma was active in. She had been on NxStage since 2006 after losing a living donor kidney. I remember the year well because that was the last time she was at the Transplant Games with us. I worked with Norma for at least 10 years at DCI here in Columbia where she was a social worker. She worked full time until ill health forced her to leave in January, 2012.
Just off the top of my head I can think of many things she was involved in:
She was active in the U.S. Transplant Games in Orlando, Minneapolis and Louisville and was an enthusiastic, vital part of the Team St. Louis.
She was the editor of CNSW Journal for quite a few years and held office in CNSW.
She was active with local and national NKF and was part of several working groups (not sure of the correct term for those groups who helped develop policy), particularly for National NKF on transplant issues.
She was active in the NxStage Users (later Home Dialyzors United), working with Rich Berkowitz and others to form the group, give it structure and produce meetings, always with the goal of promoting encouraging home dialysis.
She was active and held office in Heartland Kidney Network (Kansas, Missouri, Iowa and Nebraska) in various capacities for years.
She served on boards for all over the above organizations plus she was also a board member on our local not-for-profit organization called the Central Missouri Kidney Association. She worked tirelessly on fundraisers with us to benefit patients.
Finally, she was named Social Worker of the Year in 2011 by the Department of Social Work at the University of Missouri.
Norma is survived by her husband, Chance, who was her dialysis partner and who accompanied her on countless trips and made it possible for her to serve in so many ways, and by three adopted sons. She will be greatly missed for her creative mind and for all the ways she contributed so much both for patients, dialysis and transplant organizations and for the profession of renal social work.