KC Chapter Meeting
Jerry Niebaum opened the meeting at l:00 p.m. March 14, 2009 at the Peet Center Conference Room at St. Luke’s Hospital in Kansas City, MO.
Attending were: Jerry and Judy Niebaum, Joyce Kullman, Glenn and Arlene Kullman,
Chad Gratton, Bob and Sharon Schoonover, Bill Spink, Judy K. Reel, Jana Seibel.
Jerry opened the meeting by reminiscing about Richard Partridge who passed away the first week of March. Richard was a longtime member of the Wegener’s Granulomatosis Support Group and worked closely with Marilyn Sampson as the Public Relations person from about 1984. He kept in touch with patients from around the world; wrote letters in longhand until he got a computer. He spent many hours volunteering at the VF office as he helped with the mailings. He was a compassionate person and we will miss him.
Jerry commented that at our meetings, we talk about our disease but that this time we were going to talk about us. It was a fun time to hear where we were born, Jerry and Judy were born in the same hospital and so were Bob and Sharon. Bob and Sharon’s children graduated from the same high school in St. Charles County, MO that Arlene did only many years apart. Chad told us about his career working on cattle ranches and later he went to college to get a degree. He is proud of his 3 children: one a veterinary, one son is an airplane mechanic. (Angela) is getting her Doctorate degree in about 3 weeks and is opening her office in Belton. Bill Spink talked about growing up in KC and how his Father and Grandfather were very well known and famous business people.
Bob and Sharon talked about how AT&T moved their employees from one city to the next and how he took a buyout at just the right time.
Jody and Jana are mother-daughter; Jody is in Pharmacy School and was married last summer. Jana is a school teacher and thinks she is lucky that she moved from a small town in Kansas to Topeka because, when she became ill, she had access to more knowledgeable doctors in Topeka. Joyce told about working for AMTRAK during her college summers, living in Australia and growing up on a farm. Arlene told about being born in St. Peters, MO, moving from Harvester to Manchester; then to Gladstone, living on a farm near Smithville for 42 years and now living in Gladstone. Glenn talked about working on the railroad, being in the Army/Air Force and living in Managua, Nicaragua at the time when that song was popular.
Joyce talked about the different research projects going on around the world and there is an effort now for the researchers to work closely with each other. She also talked about some of the blind studies of medications being conducted. Also, she told about the survey the VF has been working on and she and Jerry will work toward getting it completed by newly diagnosed, those diagnosed several years and then those longtime patients.
Neither Brandi nor Elizabeth could be at the meeting to talk about the 5K race/walk scheduled for June 13th at Swope Park. Joyce told about getting sponsors; the purpose of the walk is raise awareness of the VF and to bring in money for the organization.
Meeting adjourned at 2:30 p.m.
Arlene R. Kullman