VASCULITIS FOUNDATION

KC Chapter Meeting

Jerry Niebaum opened the meeting at l:00 p.m. on June 9, 2007 at the Mill Creek dining room at St. Luke’s hospital in Kansas City. Vasculitis Foundation’s purpose is to be an advocate and give support to patients, also to promote research into cause and cure of the disease.

Attending were Bill, Donna , Glenn and Arlene , Jerry and Judy Niebaum, Richard , Mary Ann , Bob and Sharon, Bill and Kay, Mary and her sister, Julie, Vincent and Mary Helen .

Joyce, Executive Director, was in Texas doing a triathlon.

Bill E. mentioned he is the first WG patient his physician has seen, and will be the last as he has an appt. later in June with Dr. Abdou.

Jerry talked about not being in remission, but that he and Judy had just returned from Ireland. He and Judy are to celebrate their 46^th wedding anniversary on June 11^th.

Richard said nothing has changed since last meeting and that the stroke he had many years ago is more of a problem now than WG.

Vincent is a newly diagnosed patient with Hypersensitivity vasculitis; he has a rash and his ankles itch, He is taking Imuran and Jerry encouraged him to read the article in the current Newsletter. Jerry said he was impressed with the timeliness of the articles in the Newsletter. Mary Helen mentioned they would be going to a wedding dance this evening but would only be able to dance a short time before his legs would hurt.

Bob S., who was diagnosed in October 2006, talked about the medications he is on. Later in the meeting Bob and his wife, Sharon, talked about the 50 plus group they belong to and some of the experience they have in conducting walks for a non-profit. It appears they will be asked to help the office plan events for Awareness Week in September.

Julie is on dialysis and on the list for a kidney transplant but must have WG in remission before a transplant can be performed. She was diagnosed in November 2006.

Bill also has Scleroderma and Reynauds diseases.

Jerry introduced our guest speaker, Dr. Mary Vernon from Lawrence, KS. She has co-authored a book, ATKINS DIABETES REVOLUTION and gave a handout of her talk, “Dietary Modulation of Inflammation.” We learned how different foods can help us control our illness. Jerry suggested we ask Dr. Abdou to invite Dr. Vernon to speak at the next symposium, which will be next June at the Mayo Clinic in Rochester, MN.

There was a discussion about wearing a medical alert bracelet or dog tag so medics and emergency room attendants know when they are treating a vasculitis patient . Dr. Vernon said they are available at pharmacies.

Mary Ann talked about Awareness Week, Sept. 23-29^th, and the possibilities of doing a walk or activities that brings attention to vasculitis. Details need to be worked out.

She also asked guests to take an attendance prize; she had brought a cap, t-shirts, sweatshirts, note pads, etc from the VF store at the office.

Donna suggested VF produce a recipe book; she has one from the Lupus Assoc. No action was taken.

Refreshments of fruit and sugar free cookies were served.

The next meeting will be held in conjunction with Awareness Week.