The K.C. Chapter, Vasculitis Foundation, meeting was held on December 11, 2010 in the Fountain Dining Room at St. Luke's Hospital in Kansas City, at 1:00 p.m. with the following members in attendance.
Jerry and Judy Niebaum
Chad Gratton
Mary and Julie Tanner
Brian Woglam
Glenn and Arlene Kullman
Joyce Kullman
Kathy Conrardy
Sondra Schmidt
Bill Spink
Angie Wright, AuD
Trish Varraveto
Our guest, Dr. Nabih Abdou, spoke about a recent conference on rheumatology he had attended.
Dr. Abdou talked about the different research projects being conducted as it relates to Wegener's Granulomatosis. One recent advance he mentioned were new findings of Interlukins as markers for vasculitis diseases. The research looks promising.
Dr. Abdou then asked for questions.
One was whether diet and nutrition had a place in the treatment of WG; He didn't elaborate, but felt that this was not a signficant factor. Then the discussion went to Rituxan. He said that Rituxan does not harm kidneys. It has been proven to be effective in the treatment of vasculitis, but is quite expensive and drug plans will typically not cover this drug.
Trish asked if any of the research has been directed to children with WG; her 21 year-old daughter has WG.
He asked Chad, Glenn and Jerry to tell about their flares.
Bill Spink mentioned he has WG, Reynauds, Scleroderma. Scleroderma seems to be the biggest problem especially now during the cold weather. Dr. Abdou said he does not see any other patient with these three diseases.
Joyce announced that because there are so many other activities during each week of May, VF will use the entire month for Awareness Month.The Walk held on April 24th, 2010 at Shawnee Mission Park was very successful both in a social way and as a moneymaker. The Vasculitis Foundation was founded in Kansas City in 1986 as the Wegener's Granulomatosis Association, so 2011 will mark 25 years since our founding.
Angie Wright, AuD, will speak at our next meeting, March 12th 2011. She is the daughter of patient, Chad Gratton.
The meeting will be held at the same place: Fountain Dining Room, St. Luke's Hospital, Kansas City, MO. at 1:00 p.m.