VASCULITIS FOUNDATION

 

KC Chapter Meeting

 

Jerry Niebaum opened the meeting at 1:00 p.m on August 19, 2006 at the North Kansas City Community Building.

 

Jerry asked for  someone  to take notes and Arlene K. volunteered.

 

Rita, Tim, Donna, Glenn, Arlene, Joyce , Jerry,  Judy, Richard, Ann, and  Mary Ann were present.

 

How to celebrate Vasculitis Awareness Week was discussed.  Jerry attends  the meetings of the  Retirees Club of KU. About  70 people  attend  so he plans to distribute brochures to them.   Mary Ann mentioned that Joyce attends civic clubs’ meetings and gives  a short talk  about VF.

Joyce asked Rita to try to get a notice in the Lee’s Summit section of the KC STAR and for Richard to get one in the Gladstone section.  Joyce will contact Walt Bodine, the host of a one hour show on KCUR radio in KC.  Each day the program features a different topic and guests.

 

This year’s walk for Vasculitis will be on Saturday, September 23rd at Macken Park in North Kansas City.  Last year’s walk at Parkville was a successful one and made about $700.00 for VF.

 

It was mentioned that in the past WG/VF would set up a table at Health Fairs and give  information and brochures to people stopping at the table.  In recent years, we don’t hear or read  about the event until it is too late to register or the Fair is limited to a hospital and their different departments.  The question is how to find out about the fairs and get

registered and staffed on time.

 

Ann, Arlene, Joyce, Mary Ann, Rita, and Tim  shared their impressions of  the Symposium in Baltimore in July; Rita has attended all of the symposiums.  The first one was at the Marriott at the KC airport; it was a one- day meeting and more than 100 people attended. The next one will be in 2008 in Rochester, MN.  Joyce explained how the site is chosen.  Rochester will be  much less expensive than the ones on the East Coast.

 

Jerry commented that he was very impressed with the July/August NEWSLETTER; especially the article ALL ABOUT PREDNISONE. 

 

It was a time  to reminisce as we paid a tribute to the late Iva Roe, the 2nd Executive Director of the Wegener’s Granulomatosis Assoc. (WGA) and the President of the KC Chapter of the WGA.  Marilyn Sampson, Founder, asked Iva to help her and then, when Marilyn’s health failed, Iva took over the responsibilities.  Arlene mentioned that Marilyn could not have found a more ideal person for the job.  Iva had a business background and Marilyn had a medical background; they worked very  well together.  Iva’s friend, Jim Shelquist ran hundreds of copies of the materials for the packets and helped assemble them and he was familiar with real estate so found office space of WGA.  Marilyn asked Richard to do an article for the GLADSTONE SUN newspaper about Iva.  She grew up in Northern, MO, and 3 of her friends developed WG.  She wondered if it was caused by coal dust in the air and runoff  into the water.   Iva served as Executive Director and President of the WGA KC Chapter from 1997 until 2002 when her health began to fail.      It was during this time that the Internet became so popular and  membership increased tremendously. 

 

How to create Support, Awareness and Research (SAR) was the next subject of discussion.  More volunteers are needed, and  greater attendance at the Chapter meetings are two of the concerns.  Ann asked about doing a 4 hour symposium with speakers, perhaps a Nutritionist, Dr. Abdou and perhaps an Audiologist.  It was suggested Dr. Abdou do a notice of the meetings  to all of his VF patients.

 

Our newest member, Tim, sees Dr. Warner.  However, she did not mention the VF as a source of help.  Tim is interested in talking to other Churg Strauss patients; Joyce will follow-up for him. 

 

It was suggested the KC Chapter meet again on  November 18th.  Jerry will bring a sugar free cake to  celebrate Judy’s birthday.  He will try to find a more centrally located meeting room plus the NKC Community building costs $30.00 per hour.

There is a room at First Watch restaurant in NKC but they expect $100.00 in food purchases in order for the room to be free.

 

Joyce mentioned  the office has discontinued  distributing  the ink cartridge recycle bags because VF was not receiving the promised funds.

 

There was a discussion among the patients about their medications and nasal sprays.

 

Jerry talked about the VF BLOG site; Joyce said she expects  the new website will ‘roll out’ on Wednesday evening, August 23rd. It also was discussed about patients who can find physicians by zip code. VF follows HCFA rules about patient privacy.

 

Meeting adjourned at 3:00 p.m.

 

Arlene K.