VASCULITIS FOUNDATION

KC Chapter Meeting

Today, the 18^th of November is not only the KC Chapter Meeting but it is the birthday of one of our members, Judy Niebaum We congratulated her on this occasion.

Jerry Niebaum then opened the meeting at 1:00 p.m. on November 18, 2006 at

St. Luke’s Hospital in Kansas City; Dr. Abdou made arrangement for the free use of a meeting room.

The number of members attending was small; Donna Grant, Chad Gratton, Arlene and Glenn Kullman and their daughter, Judy, who was visiting from Seattle, Jerry and Judy Niebaum, Bill Spink, and Mary Ann Quick.

Jerry presented info on the Plan D for prescriptions and asked for comments.

It seemed each patient had their own experiences with getting prescriptions.

Mary Ann told about the fund raisers; KC chapter had a successful walk, raising $1500.00; there will be an article in the next newsletter listing other walks.

The website is up and running; country store is also up and running, and a committee is working on updating the newsletter.

Joyce Kullman attended the meeting of the Rheumatologists in Washington, DC last weekend and from there went to San Diego to attend the Nephrologists meeting. She will be back in KC tonight.

Judy Kullman talked about updating the survey that was done 10 years ago and published in the Journal of Rheumatology; the Board approved the purchase of software. She said perhaps there would be a phone link available for patients who did not wish to do respond on line. She is working with the Office Staff at this time.

Chad, who lives in Tonganoxie, KS, said Dr. Abdou considers him a walking miracle. He talked about his 2 recent relapses and how much he enjoyed talking to and hearing from other patients. With so few in attendance, there was ample time for visiting. Chad and Bill talked about being healthy until Wegeners Granulomatosis hit suddenly and very hard.

Jerry, Bill, and Glenn talked to him about physicians, diagnosis, medications, etc...Jerry and Chad had many of the same symptoms.

Bill and Jerry have Reynaud’s symptoms and, so that called for a discussion of those symptoms.

Chad had seen four ENTs in 5 years; each had their own method of treating.

Jerry asked Mary Ann and Donna to talk about what they do as members of the Staff at the Vasculitis Foundation; they told about how the office received so many calls for information after the New York chapter members appeared on THE TODAY SHOW.

Donna was kept busy assembling info packets and getting them mailed. She is responsible for the mailing of the packets requested by physicians, patients, etc. She also mails country store items, does the filing and other duties as they arise. She works each afternoon.

Mary Ann answers the phone, does data entry, makes the deposits, and whatever else she can to give patient support. She works fulltime;

Jerry lead a discussion about getting larger attendance at these meetings; the St. Luke’s meeting room seems to be centrally located and the price is right. Bill Spink invited the Chapter to meet on March 10^th at his home in Parkville. We are each to bring a friend.

Dr. Abdou is willing to meet with us and so is Dr. Mary Vernon. Her interests are nutrition and exercise and how they relate to a vasculitis disease.

The Scleroderma Group meets every 3 months and has speakers.. As secretary I didn’t hear anyone volunteer to contact them to learn how they get their speakers.

Dr. Abdou, on a CD made at the 2004 Symposium at the Cleveland Clinic urged and challenged all members of the Vasculitis Foundation, to become motivated, inspired, and educated about Wegener’s Granulomatosis and Vasculitis. Diseases. The theme for the symposium was KNOWLEDGE IS THE KEY .

He urged everyone to get well and then help others get well. He believes the secret to success is to use your talents, be compassionate, show determination, work hard and contact others so they are not alone.

Refreshments, including a delicious carrot birthday cake, were served and the meeting adjourned.

ARLENE R. KULLMAN