Vasculitis Foundation - Kansas City Chapter

Minutes of Dec. 17 Meeting

2012-01-06T09:41:00.000-08:00

The Kansas City VF Chapter met at the VML building on December 17, 2011; the members were most appreciative to our newest member, Kelly Dougherty, an employee of VML, who arranged for us to use the facility. Parking was within a few feet of the entrance and the meeting room was just a few feet inside.

Attending the meeting were Jerry and Judy Niebaum, Kelly Dougherty, Bill Spink, Bob and Sharon Schoonover, Mary Ann Quick , Glenn and Arlene Kullman, Joyce Kullman and Karen Sampson Higgins and her husband, John.

Kelly has Bechet’s disease and talked about the symptoms and treatment. Several members suggested she find a physician, who has experience with Bechet’s disease.

Joyce talked about the ½ day symposium to be held in Kansas City on May 5^th; she believes the cost to attendees will be in the $25.00 range. At this time, she is talking to several experts in the Vasculitis field to address the group.

Also, there will be a one day symposium in Chicago on Saturday, April 21^st and one in Atlanta on July 21^st. It will be less expensive for attendees to travel to one of these locations for a one day event than to travel to a multi-day conference.

Jerry introduced Karen Higgins who, in turn, introduced her husband, John. Karen is an RN and is working at the former Spelman Hospital in Smithville. It is part of the St. Luke’s hospital system.

She came to tell us about her Mother, Marilyn Sampson, who started the Wegener’s Granulomatosis Support Group. She gave a short history of her family; her Dad, Bob, is a retired pilot; her Mother was an RN also. Karen has 2 brothers, Tom and Ty and one sister, Julie. Karen and her husband, John, have a 16 year old son, Craig. Julie has 3 sons, Tom has 4 sons, and Ty, who lives in Chicago, doesn’t have children.

Marilyn graduated from Nursing School and shortly thereafter married Bob. They lived in Gladstone, MO for a time and then moved to a farm in Platte County. She told how it was when the cattle would get out during the night and they would get a call about it. The children would get up; round up the cattle and get them into the corral. Bob was a pilot and was out-of-town frequently; therefore Marilyn and the children were responsible for the farm.

In the late 1970’s Marilyn became ill; doctors could not figure out what the problem was until1981. Dr. Richard DeRemee diagnosed the illness as Wegener’s Granulomatosis. Marilyn then met Dr. Nabih Abdou, who became her doctor as well as adviser for the Support Group, which she founded later.

Marilyn met a WG patient at Mayo Clinic in the early 1980’s; they started corresponding; then they heard of another lady with WG and Marilyn wrote to her. By that time, Dr. DeRemee and Dr. Abdou gave Marilyn the names of patients, and she wrote to them. This was before word processors so she typed the letters. She began finding literature relating to WG; she copied it and began mailing it to patients.

In 1986, she met two WG patients, Fern Thompson and Connie Barnett; this was the start of the Wegener’s Granulomatosis Support Group.

She began writing a Newletter; she’d get it printed and friends would assemble and address it;. This activity was at Marilyn’s kitchen table in Platt City, MO. The post office had just started requiring bulk mail to be sorted by zip code; that was the last step before Marilyn took them to the post office.

Karen talked about the dresses her Mother sewed for her and Julie; they always had new dresses for the school dances. She made bridesmaid dresses when Karen and Julie were planning their weddings.

After Marilyn’s Dad died, she would fly once each month to Florida to help her Mother. Eventually, , her Mother moved to Marilyn’s home where she lived for several years. She was legally blind, and Marilyn had a hearing problem but they enjoyed going to the movies. They sat in the back row of the theatre; Marilyn told her Mother what she saw, and her Mother told her what she heard; they laughed about the good times they had.

Marilyn did all these things while she was ill; she would drink a gallon of water a day so that her kidneys would not be damaged by the strong medication she was taking.

Her oldest grandson, Jay, came to live with his grandma and grandpa when he was in the 5^th grade. She realized he was behind in his school work so she worked with him that year to get him caught up. About that time, home computers were just becoming available; Marilyn got one and was learning to use it. Once in a while, she would have a problem and Jay would help her after school. Her friend and Pastor, Father Wm. Dineen, was a computer whiz and would lend a hand if Jay couldn’t solve the problem.

Marilyn asked Iva Roe, another WG patient, to help her and they became dear friends as well as co-workers.

Karen shared her Mother’s photo albums, cookbooks and memorabilia. Marilyn died of cancer on October 7, 1997.

Refreshments of Christmas candies and cookies were served..

The next meeting for the KC Chapter will be May 5^th at the symposium. Location and details for the symposium will be forthcoming.

Submitted by Arlene R. Kullman

December 17, 2011 meeting - different location

2011-11-29T12:23:00.000-08:00

As most of you know, the Vasculitis Foundation was created by Marilyn Sampson in Kansas City. I'm delighted that our guest speaker for our Dec. 17 meeting will be Karen Higgins, Marilyn's daughter! She will talk about the life of her mother and the creation of the Vasculitis Foundation.

We have a new meeting place for the December meeting and our host will be Kelly Dougherty. She writes:

"The address is VML, 250 Richards Rd, KCMO 64116. It's the old downtown George Wheeler Airport. It's right off 169 hwy/aka Broadway (just over the Broadway bridge - stay in left lane and take the first left exit right after you cross the bridge) We'll be in the Constellation Room right close to the front door - and I'll be keeping my eyes open for folks. There is a circle drive and if someone needs to they can park in there. They just need to go in the entrance that says "do not enter" as that is the only way, promise no one will get in trouble. We have soda, water and coffee here so no one needs to worry about bringing drinks, however food is certainly welcome. My (Kelly's) cell is 913-449-8110 if there are any questions. VML is not open on Saturday's so we pretty much have it to ourselves."

Minutes - Oct. 22, 2011

2011-11-01T09:15:00.000-07:00

The K.C. Chapter, Vasculitis Foundation, meeting was held on October 22, 2011 in the Fountain Dining Room at St. Luke's Hospital in Kansas City, MO at 1:00 p.m with the following members in attendance.
Jerry and Judy Niebaum,

Mary and Julie Tanner
Glenn and Arlene Kullman
Joyce Kullman
Sondra Schmidt
Shannon Morgan
Bob and Sharon Schoonover and
new member, Kelly Dougherty.

Jerry and Shannon talked about the recent survey of VF chapters; 61% of the surveys were returned.

We welcomed a new member, Kelly, who has recently been diagnosed with Bechet's. She spoke about how long and difficult it was to get a diagnosis; she believes her younger brother may also have Bechet's but he hasn't wanted to take the time to be diagnosed; he has a family and a job that keep him occupied. Jerry told her it is unusual that a brother and sister have the same disease.

It was mentioned that Dr. Abdou was seen in his office suite recently when we believed he had retired.
His retirement was officially July 1, 2011.

Joyce announced that there will be a 1-day Regional Symposium on April 21, 2012 in Chicago. She said there will more of these 1-day symposia instead of the International one held every 2 years.

At the time of our meeting, she was also working on finding a speaker who could lead a 1/2 day symposium in the Kansas City, MO area next May 5. For this meeting, the expenses would be an honorarium, and transportation for the speaker. Perhaps, a small fee of say $25, each, would be charged for attendance. A big problem is finding a location for the meeting as well as handy parking for the attendees. This meeting would be in place of an annual walk.

Arlene will invite Karen Higgins, RN to be our speaker for the December 17th meeting. Karen is the daughter of the VF's Founder, Marilyn Sampson.

Upcoming meetings:

December 17, 2011

March 10, 2012

May 5, 2012

Chapter Mtg. - Oct. 22

2011-10-05T12:58:00.000-07:00

The Kansas City Chapter of the Vasculitis Foundation will meet again on Saturday, October 22, at 1p.m. in the Fountain Dining Room (next to cafeteria) in St. Luke's Hospital north of the KC Plaza. Jerry Niebaum will present results of the survey of VF chapters conducted recently and lead discussion on the futures for our chapter. May is vasculitis awareness month and we'll talk about possible activities for our chapter.

Annual Walk on May 14, 2011

2011-05-27T11:16:00.000-07:00

About 25 of us gathered for a 3 mile walk, pot luck, lunch, and white elephant gift exchange at Shawnee Mission Park, Shelter 8 at 9:30a.m. on Saturday, May 14. Event T-shirts were distributed to registrants. We all looked terrific. Bob & Sharon Schoonover were event organizers. Bob mapped out a terrific beautiful route through rural areas of the park. It was cool and it was windy, but in spite of the weather we had a fun time and raised more than $1500 for vasculitis research.

Minutes of March 12 meeting

2011-05-27T11:10:00.000-07:00

The K. C. Chapter, Vasculitis Foundation, meeting was held on March 12, 2011 in the Fountain Dining Room at St. Luke's Hospital in Kansas City at 1:00 p.m. with the following members in attendance:

Chad Gratton, his daughter, Angela Wright, Au.D. Doctor of Audiology, and her children, A.C. and Tori, Jerry and Judy Niebaum, Glenn and Arlene Kullman, Joyce Kullman, Kathy Conrardy, and Sandra Schmidt.

Guest speaker, Angela explained the workings of the inner ear, the difference between dizziness and vertigo, the different types of hearing aids and then answered questions.

The next meeting of the Chapter will be May 14t.

Submitted by Arlene R. Kullman

Next Meeting - Saturday, March 12, 1p.m.

2011-01-10T15:23:00.000-08:00

The Kansas City Chapter of the Vasculitis Foundation will meet again on Saturday, March 12, at 1p.m. in the Fountain Dining Room (next to cafeteria) in St. Luke's Hospital north of the KC Plaza. Our guest speaker will be Angela Wright, who will speak about vasculitis disease and its effect on hearing. Please join us.

Minutes of Dec. 11 Meeting

2010-12-14T06:26:00.000-08:00

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.

Minutes of October 9 meeting

2010-10-30T09:36:00.000-07:00

The K. C. Chapter meeting was held in the Fountain Dining Room at St. Luke's Hospital at 1:00 p.m. with the following members in attendance:

Jerry and Judy Niebaum

Chad Gratton

Mary and Julie Tanner

Joseph Carpenter

Karin and Brian Woglam

Glenn and Arlene Kullman

Jana Seibel

After welcoming the attendees, Jerry gave a thorough report on the VF Symposium that was held in Long Beach, CA in July. He was impressed with the Speakers, especially Dr. Peter Markel.

More than 300 people plus 30 speakers were in attendance.

Jerry and Judy talked about the fun they had riding AMTRAK to and from CA.

We all enjoyed the homemade cookies Judy brought.

Arlene urged everyone to consider being a volunteer at the VF office but, because most of the attendees came quite a distance, it isn't feasible for them to drive to the office.

Chad said he is feeling so much better after treatment for his throat.

At the end of our session Jana Seibel offered the following advice.

"Since my kidney transplant, I wear a medical ID bracelet from the MedicAlert Foundation. At MedicAlert, my account has information including physicians names, medical insurance, emergency contacts, as well as medication and other information that I provided. Information is updated by computer or by phone during their generous business hours. The ID bracelet I wear has my main medical conditions engraved, a number to identify me, and an 800 number that emergency personnel can call to access my information. For a reasonable yearly fee, I have peace of mind that my information is as current as I make it in case of an emergency. MedicAlert Foundation can be found at medicalert.org or by calling 888-633-4298."

The next meeting of this Chapter will be December 11th at this same location.

Submitted by Arlene R. Kullman

Meeting on December 11, 2010

2010-10-30T09:33:00.000-07:00

Our support group will meet on Saturday, December 11, from 1pm to 3pm at St. Lukes Hospital, 4401 Wornall Road in Kansas City, Missouri. The meeting room is the Fountain Dining Room adjacent to the cafeteria on level B2. Parking in the hospital garage is free on Saturdays. Our speaker will be Dr. Nabih Abdou, shown here.

First, and foremost we are a support group. We talk freely about our various illnesses, their treatments, and our progress in fighting vasculitis disease. We also discuss current thinking about treatment options. We try to find speakers who can talk with us about nutrition, exercise, hearing, and other aspects of our various diseases & symptoms.

All who have an interest are invited. There are no fees or collections taken. We are a volunteer organization who share a class of diseases of special concern.

Meeting October 9

2010-08-27T10:29:00.000-07:00

Our support group will meet on Saturday, October 9, from 1pm to 3pm at St. Lukes Hospital, 4401 Wornall Road in Kansas City, Missouri. The meeting room is the Fountain Dining Room adjacent to the cafeteria on level B2. Parking in the hospital garage is free on Saturdays. Shannon Morgan, coordinator for all Vasculitis Foundation chapters, will be our guest. We will discuss the recent conference of the Vasculitis Foundation in Long Beach California. One of the speakers was Dr. Nabih Abdou, shown here.

First, and foremost we are a support group. We talk freely about our various illnesses, their treatments, and our progress in fighting vasculitis disease. We also discuss current thinking about treatment options. We try to find speakers who can talk with us about nutrition, exercise, hearing, and other aspects of our various diseases & symptoms.

All who have an interest are invited. There are no fees or collections taken. We are a volunteer organization who share a class of diseases of special concern.

2010-04-25T16:39:00.000-07:00

Walk for Vasculitis at Shawnee Mission Park on April 24, 2010
showing 67 of those participating.

For a higher resolution copy of the above picture select:
Vasculitis Walk participants then click on that photo to enlarge it even more.

The walk team raised $2,804 for vasculitis research and support. Way to go, team!

Chapter Meeting - March 13, 2010

2010-03-20T13:25:00.000-07:00

The KC Chapter meeting was held in the Fountain Dining Room at St. Luke's Hospital at 1:00 p.m. with the following members in attendance:

Dr. Ann Warner

Arlene and Glenn Kullman

Annette and Traci Marriott

Joyce Kullman

Bob and Sharon Schoonover

Chad Gratton

Judy Harrington, Chad's guest

Bob and Rosemary Peskin? Giant Cell

Sondra Schmidt

Carla Trigleth and spouse Behcets

Dr. Warner opened the meeting by asking each patient to have a question for her to discuss and answer. She then discussed each one until the patient was satisfied. She explained the ANCA and talked about how it isn't used for some of the vasculitis diseases. She says she uses what the patient tells her to help with the diagnosis. She discussed Prednisone and for some patients it causes personality changes. She discussed Behcet's and Carla related to many of the symptoms. She and her husband are newcomers to the KC area; they are from Jackson, Mississippi and thoroughly enjoyed the snow.

Joyce has information at her office about the National Behcet's clinic and will forward it to Carla.

Dr. Warner spent an hour with the Group; we let her know we appreciated her giving up an hour on a Saturday afternoon to be with us.

Sharon asked Dr. Warner . how to get mail directly to a Physician instead of it being tossed in the circular file. She said to be sure the Vasculitis Foundation name and address stood out on the envelope; the Schoonovers want to get information to many doctors regarding Vasculitis diseases so they at least consider the possibility it could be one of them, thereby making the diagnosis quickly.

Bob and Sharon talked about the upcoming 5k run/walk/bike on April 24, 2010 at the Shawnee Mission Park. It will be followed by a potluck meal. Sharon talked about how convenient and beautiful the trail is and how they hope there will be a large group participating.

We did not set a date for the next meeting.

Submitted by Arlene R. Kullman

Upcoming meeting - March 13

2010-03-01T08:59:00.000-08:00

Our group will hold its first meeting of 2010 on Saturday, March 13, from 1pm to 3pm at St. Lukes Hospital, 4401 Wornall Road in Kansas City, Missouri. The meeting room is the Fountain Dining Room adjacent to the cafeteria on level B2. Parking in the hospital garage is free on Saturdays. Our guest speaker will be Dr. Ann Warner. Dr. Warner graduated from KU Medical School, and did her residency and fellowship at St Luke's and KU Med, respectively. She has been practicing rheumatology for 20 years in KC.

First, and foremost we are a support group. We talk freely about our various illnesses, their treatments, and our progress in fighting vasculitis disease. We also discuss current thinking about treatment options. We try to find speakers who can talk with us about nutrition, exercise, hearing, and other aspects of our various diseases & symptoms.

All who have an interest are invited. There are no fees or collections taken. We are a volunteer organization who share a class of diseases of special concern.

December 2009 Meeting Minutes

2010-01-13T17:07:00.000-08:00

Attending the December 12, 2009 meeting were: Jerry and Judy Niebaum, Sharon and Bob Schoonover, Glenn and Arlene Kullman and Joyce Kullman.The meeting was held at the Santerra on Shady Lane Clubhouse and was hosted by the Kullmans. They live at Santerra.

Jerry began the meeting with a discussion about why so few people are attending the KC Chapter meetings. Perhaps December is not the best month for a meeting but attendance has been down at the previous meetings also.

Sharon talked about the stroke she had in late summer and praised the people at the theatre where she and Bob were seeing a movie for their quick response and for calling 911 immediately. It is known that the quicker a stroke is treated, the greater the possibility of complete cure. She is back to hiking, bike riding and all the things she enjoys. She and Bob laughed about everything in their house being decorated for Christmas.

Cindy Weaver's documentary MYSTERY DIAGNOSIS, was discussed. Thanks to Cindy and her Doctor, more people have a chance to learn about auto-immune diseases.

Joyce talked about the research being conducted in both the United Kingdom and in Germany. However, some insurance companies are not paying for Rituximab because they believe the drug is experimental.

Joyce will contact Brandi to talk about a walk during Awareness Week April 25 - May 1, 2010; she did a great job last year. Bob and Sharon will look into the possibilities of having one in their area.

Joyce talked about the American Cancer Society's motto "race for the cure" vs the Vasculitis Foundation's motto "Sticking together for a cure". Seems the Cancer Society is unhappy with the VF "s motto.

The next meeting of the KC Chapter will be held at St. Luke's

Hospital Fountain Room (next to cafeteria) on March 13, 2010.

Submitted by Arlene R. Kullman

Refreshments were served

December 12 Meeting Plans

2009-11-20T08:44:00.000-08:00

Please join us on December 12, 2009

Our guest speaker will be Joyce Kullman,
Executive Director of the Vasculitis Foundation

New Meeting Time: 2p.m. to 4p.m.
New Meeting Place:

Santerra Clubhouse
6445 Circle Drive
Gladstone, MO

We will be guests of Arlene & Glenn Kullman,
who live in the Santerra development.

Note: The map below is NOT to scale.

Take I-29 north toward St. Joseph, drive about 4-1/2 miles north of the river to Exit 1C

Take exit 1C (Oak Street Trafficway) northbound

Turn right (North) on North Oak Street and drive 2 miles to 64th Street (also called Shady Lane to the east)

Turn right (East) on Shady Lane and drive two short blocks to Circle Drive the entrance to Santerra on left. Turn left on Circle Drive. The Santerra Clubhouse is the first building on the right.

October Meeting Minutes

2009-11-20T08:42:00.000-08:00

KC CHAPTER MEETING October 17, 2009

We met in the Fountain Dining Room at St. Luke's Hospital at 1:00 p.m. with the following members in attendance:

Arlene and Glenn Kullman
Annette and Traci Marriott
Jerry and Judy Niebaum
Bob and Sharon Schoonover

Jerry opened the meeting by bringing us up-to-date regarding the trip he and Judy took to
Europe. He brought 8/10 color pictures of many of the scenes they enjoyed. Seems we each had our favorite whether it was the windmill, beautiful old church, the merchants in Estonia etc.
He also celebrated his 70th birthday.
Glenn and Arlene just celebrated their 55th wedding anniversary.

Sharon told us about the stroke she suffered in July and how thankful she is that Bob recognized the problem and how quickly she received help from the theatre employees and the Emergency crew that responded. She and Bob talked about the therapy and exercising and how it has helped her recover from the stroke. Glenn told about how swimming and walking in the water has helped him recover from Sciatic nerve problem.

Sharon and Bob are compiling a list of Family Practitioners; we discussed ways of getting Vasculitis Foundation information to each of them.

Annette said she has been diagnosed with Microscopic polyangitis; she sees Doctors in St. Joseph and Cameron and, when she wanted a 2nd opinion, she saw Dr. Warner. We were in agreement that she had a good doctor who would refer her to Dr. Warner.
Glenn and Bob are impressed with Dr. Warner.

We talked about how to get speakers to attend our meetings; it is hard to get anyone to give up a Saturday afternoon.

Another discussion was how to donate our body for Vasculitis research only; not just donate our body to a Medical School.

Last on the agenda was talking about riding AMTRAK to the next Symposium which will be held in Long Beach, CA on July 30 thru August 1, 2010.

Next meeting will be December 12th at Santerra Clubhouse in Gladstone. The Kullmans will make the reservation for the facility.

Meeting Room change for Oct. 17, 2009

2009-08-18T09:56:00.000-07:00

The meeting room is the Fountain Dining Room (changed from the Peet Conference Center) adjacent to the cafeteria on level B2.

Meeting - October 17

2009-08-10T06:43:00.000-07:00

Our group will meet again on Saturday, October 17, 2009 from 1pm to 3pm at St. Lukes Hospital, 4401 Wornall Road in Kansas City, Missouri. The meeting room is the Fountain Dining Room (changed from the Peet Conference Center) adjacent to the cafeteria on level B2. Parking in the adjacent garage is free on Saturdays.

In addition to health updates we'll do some brainstorming on future meetings and activities.

Please address questions to jniebaum@sunflower.com

Vasculitis Awareness Walk - KC

2009-07-23T05:34:00.000-07:00

KC CHAPTER WALK/RUN June 13, 2009

We met at Swope Park to do a Walk/Run. Brandi Fischer and Elizabeth Clark were well organized. About 30 people either walked or ran the 5k course. Parking was convenient and the pavilion was a good place to serve the food.

Brandi and Elizabeth had obtained prizes; Target donated gift cards; they were especially appreciated by the winners.

Bagels and cream cheese were donated by a grocery store and bottles of water were donated by CVS.

Mr. & Mrs. Rizzo, (Mr. Rizzo is a WG patient) attended.

The following members of the KC Chapter attended: (to the best of my ability to get their names): Bob and Sharon Schoonover, Mary Ann Quick, Judy Blankenship, Brandi and her parents, Sandi and Tim, Angie Wright, MD and her Dad, Chad Gratton, Brandi’s friend, Elizabeth Clark, Arlene Kullman, Bill Spink, Tish Varraveto,

Mary Ann Quick was in charge of the registration fees.

Donations amounted to $$2,688,00.

Report by Arlene K.

5K Run/Walk on June 13

2009-04-16T07:03:00.000-07:00

Kansas City Vasculitis Awareness 5K Run/Walk
June 13, 2009
Swope Park, 6600 Swope Parkway, Kansas City, Missouri

Please note that the Kansas City Vasculitis Awareness 5k Run/Walk will not include Chip Times.

Registration on or before May 18 is $15
Registration after May 18 is $25

The schedule is as follows:
7:00 AM - 7:30 AM - Registration
7:30 AM - 8:00 AM - Speaker and start of the walk/run
Approximately 10:00 AM - Snacks, drinks, and prizes

For questions, please contact the Vasculitis Foundation at 816-436-8211 or vf@vasculitisfoundation.org. To register, please make your checks payable to the Vasculitis Foundation and mail to Vasculitis Foundation, P.O. Box 28660, Kansas City, MO 64188

Minutes March 14, 2009

2009-03-18T07:26:00.000-07:00

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

Vasculitis Awareness Week - May 3-9, 2009

2009-03-12T10:50:00.000-07:00

The Vasculitis Foundation needs your help by joining together and participating in Vasculitis Awareness Week May 3 - 9, 2009. The Foundation's future is based on the strength of our collective voices and actions. Together let's advance public awareness of this rare disease.

We can spread awareness by:

talking to friends and family about vasculitis and the Foundation

contacting your local newspaper to generate publicity

placing vasculitis brochures in doctors' offices

bringing in new supporters (just one new supporter can build the VF's strength)

donating extra change that you have accumulated

having a birthday party/anniversary party, etc., and in lieu of gifts, ask your
friends and family to make a donation to the Foundation

planning a fundraiser (garage sale, dinner, walk/run, craft sale, etc.)

The opportunities are endless!!!!

Please don't miss this opportunity to celebrate Vasculitis Awareness Week by taking action and actively participating in changing the lives of those living with vasculitis.

Vasculitis Awareness Week is the single largest annual event for raising awareness, but please remember, you can make a difference every day!!!! THANK YOU.

Sincerely,
Judy Blankenship
jblankenship@vasculitisfoundation.org
Vasculitis Foundation

Meeting - March 14, 2009

2009-02-09T08:06:00.000-08:00

Our group will meet again on Saturday, March 14, 2009 from 1pm to 3pm at St. Lukes Hospital, 4401 Wornall Road in Kansas City, Missouri. The meeting room is the Peet Conference Center on the main floor near the north end. Parking in the adjacent garage is free on Saturdays.

In addition to health reports we'll have some discussion about Vasculitis Week in May and potential fund raising events.

November 8, 2008 meeting

2008-10-14T06:23:00.001-07:00

Our group will meet again on Saturday, Nov. 8, 2008 from 1pm to 3pm at St. Lukes Hospital, 4401 Wornall Road in Kansas City, Missouri. The meeting room is the Fountain Dining Room (changed from the Mill Creek Dining Room) adjacent to the cafeteria on level B2. Parking in the adjacent garage is free on Saturdays.

In addition to health reports we'll have some discussion about the past Walk and plans for the next one in 2009.

Kansas City Walk

2008-10-06T07:17:00.000-07:00

The day was beautiful, participation was excellent, and the potluck was a nice addition to our annual Vasculitis Foundation Week awareness activities. I'm not sure of the official count, but there must have been 40-50 of us.

Our group will meet again on Saturday, Nov. 8, 2008 from 1pm to 3pm at St. Lukes Hospital, 4401 Wornall Road in Kansas City, Missouri. The meeting room is the Fountain Dining Room (changed from the Mill Creek Dining Room) adjacent to the cafeteria on level B2. Parking in the adjacent garage is free on Saturdays.

Note the change of meeting room. We will meet in the
FOUNTAIN DINING ROOM adjacent to the cafeteria.

Seminar on Pain Management - Sept. 20, 2008

2008-08-31T17:59:00.000-07:00

The Executive Director of our Vasculitis Foundation, Joyce Kullman, has asked us to help publicize a free pain management seminar set for Saturday, Sept. 20, 2008 at the Kauffman Foundation. Click on the following selections for more information.
Seminar Flyer
Seminar Agenda

posted by Jerry Niebaum
jniebaum@wizardofkansas.com

Minutes - June 21, 2008

2008-06-26T04:23:00.000-07:00

VASCULITIS FOUNDATION

KC Chapter Meeting

Jerry Niebaum opened the meeting at 1:00 p.m. on June 21, 2008 at the Peet Center Conference Room at St. Luke’s Hospital in Kansas City, MO.

Attending were: Jerry and Judy Niebaum, Mary and Julie, Richard, Dean and Ruth, Tish, Kalli, Joyce Kullman, Glenn and Arlene, Shelly and Todd, and Tim.

On the agenda for this meeting were to hear reports and comments from those who attended the VF Symposium on June 6, 7 and 8th of June in Rochester, MN.

Jerry reported on the Chapter Leaders meeting on the Friday morning of the Symposium. Their suggestions were: To conduct regional one day symposia

To enlarge VF’s International presence by having symposia
similar to the one held in the UK last year

Establish regional offices ( in a home, vs. renting a building)
similar to the two in Florida.

Organize volunteers thru the Chapters worldwide

The next topic was: Awareness Week, September 21-27th. Brandi of the KC Chapter will take the lead for organizing events. We will hear more about what this chapter will be doing to get the word out to the public.

Medical Awareness Week will be held in 2009 but the date has not been announced.

At the Symposium, Christie Abele of California spoke about the Medical Advisory Board and the annual report on Vasculitis research. The discussion was to develop a Vasculitis Research Center.

In 2007, 35 events by different Chapters raised $113, 940; many of these events have been publicized in the NEWSLETTER.

Jerry talked about the statistics showing the state of Kansas has the most known members of the Vasculitis Foundation; Hawaii has the least.

Tish told about the “tulip” project. At the end of Spring when landscape companies are digging up the bloomed tulip bulbs; she asks for them. She then sells a grocery bag full for $5.00. That serves 2 purposes: it recycles the bulbs and it makes money for the VF.

Jerry stressed Vasculitis patients should be checked by a dermatologist frequently to rule out the possibility of skin cancers. He talked about his history and how quickly the cancers can appear.

Discussions on medications, symptoms, doctors who are very good at answering questions and about finding a doctor or doctors who know what they are doing.

The next meeting has been tentatively set for September 27th and will include a picnic potluck.

Meeting adjourned at 2:30 p.m.

Minutes by ARLENE

Chapter Meeting - June 21, 2008 at 1:00p.m.

2008-05-22T13:27:00.000-07:00

Vasculitis Foundation – Kansas City Chapter meeting – Saturday, June 21, 2008, 1:00p.m. Jerry Niebaum's cell phone is 785-393-2248 if you have problems finding us.

St. Luke’s Hospital
4401 Wornall Rd
Kansas City, MO 64111-3220, US

Our meeting room is the Peet Center Conference Room on the hospital 1st floor towards the north end of that floor. Look for signs. The south end of St. Luke’s Hospital is a parking garage. From Broadway turn east on 45th Street. Parking is free in the garage on Saturdays.

Several of us will be attending the Vasculitis Foundation Conference at Mayo Clinic in Minnesota in early June, so we will share some of those experiences as well as share health updates and ongoing issues.

Frequency of Vasculitis Membership by State

2008-03-17T09:53:00.000-07:00

Glenn Kullman has created a very interesting bar graph showing the frequency of Vasculitis Foundation membership by state. The PDF file can be accessed by: Frequency of Vasculitis by State

Chapter Meeting - March 15, 2008

2008-03-17T09:36:00.000-07:00

VASCULITIS FOUNDATION - KC Chapter Meeting

Jerry Niebaum opened the meeting at 1:00 p.m. on March 15, 2008 at the Peet Center Conference Room at St. Luke’s Hospital in Kansas City, MO.

Attending were: Bob and Sharon, Mary and Julie, Jerry and Judy, Chad, Mary Ann, Richard, Dean and Ruth E., Tish and Guest Speaker, Angela Wright, M.A. of the Otologic Center in K.C.

Angela is the daughter of Vasculitis patient, Chad; she talked about the workings of our ears and the tests she does to determine the cause of the problems the patient is experiencing. Also, she talked about how some medications have side effects that can cause tinnitus or hearing loss. She talked about several hearing aids and how they have been improved during the last 10 years. She brought several and, offered to show them to anyone who was interested..

Mary shared the very good news that her sister, Julie had received a kidney transplant in January and is doing very well. We were all excited to hear Julie tell about her brother being the donor and because of that, she will not need so many anti-rejection drugs for the rest of her life. She is thankful she doesn’t need dialysis anymore.

Dean is a newly diagnosed WG patient from Olathe, KS.; his wife, Ruth, is a retired registered nurse. They were impressed that there were other WG patients who had been in remission for some time and are doing well.

Chad, Bob and Dean told about their experiences of going from one doctor to another before they were finally diagnosed.

Tish is the Mother of a 19 year old daughter with WG who is in college at Notre Dame; Tish knew about the VF organization for some time but said she was in denial that her daughter had a disease that there was not a known cure. Tish is interested in gene research . Her other daughter at age 11 was diagnosed with a Vasculitis disease; her sister also had a vasculitis disease when she was young.

There was a discussion about how the different medications used for WG affected different patients.

Jerry told about the 3 cancers he had removed from his forehead; the scars are fading. He was complimented on his well written article in the January/February 2008 issue of the Vasculitis Foundation Newsletter Jerry and Judy are planning a family vacation in Hawaii.

Because the VF Board of Directors was meeting this weekend in Kansas City, Joyce Kullman, Executive Director, could not attend the KC Chapter meeting.

Jerry asked for a show of hands of those who plan to attend the Symposium at the Mayo Clinic on June 7th, 8th and 9th. The discussion ended with his recommendation that as many as possible attend so they can hear from the different Medical Specialists all in the space of 3 days.

The next meeting of the KC Chapter will be June 21st tentatively planned to be at the Peet Center Conference Room of St. Luke's Hospital if it is available.

Meeting adjourned at 3:00 p.m.

March 15 meeting plans

2008-02-11T05:53:00.001-08:00

For our March 15 meeting our guest speaker will be Angela Wright.

Angela Wright, M.A. received her degree in audiology from KUMC in 1995 and is currently working on her doctorate. She is employed by the Otologic Center in Kansas City where she performs tests of hearing and balance. She will be speaking on the types of hearing loss and balance problems that are associated with vasculitis and treatment options that are available.

Please join us at 1p.m. at the Peet Conference Center in St. Lukes Hospital at 1p.m. on Saturday, March 15. More meeting details are in the related posting below.

Kansas City Chapter Meeting - March 15, 2008

2008-02-03T05:26:00.000-08:00

Vasculitis Foundation – Kansas City Chapter meeting – Saturday, March 15, 1:00p.m.

St. Luke’s Hospital
4401 Wornall Rd
Kansas City, MO 64111-3220, US

Our meeting room is the Peet Center Conference Room on the hospital 1st floor towards the north end of that floor. Look for signs. The south end of St. Luke’s Hospital is a parking garage. From Broadway turn east on 45th Street. Parking is free in the garage on Saturdays.

We will take some planning time for future meetings and events and share health updates and concerns. Our attendees include vasculitis patients, care givers, family members, and Vasculitis Foundation staff. All who have an interest or concern are welcome to attend.

Our guest speaker for the March meeting will be Angela Wright, Chad's daughter.
Hope to see you all there.

An article by Jerry Niebaum about his health experiences appeared in the Jan-Feb issue of the Vasculitis Foundation Newsletter. Link here to an electronic version of that article.

November 3 meeting

2007-09-27T08:57:00.001-07:00

Vasculitis Foundation – Kansas City Chapter meeting – Saturday, Nov. 3, 1:00p.m.

St. Luke’s Hospital
4401 Wornall Rd
Kansas City, MO 64111-3220, US

Our meeting room is the Peet Center Conference Room on the hospital 1st floor towards the north end of that floor. Look for signs. The south end of St. Luke’s Hospital is a parking garage. From Broadway turn east on 45th Street. Parking is free in the garage on Saturdays.

We will take some planning time for future meetings and events and share health updates and concerns. Our attendees include vasculitis patients, care givers, family members, and Vasculitis Foundation staff. All who have an interest or concern are welcome to attend.

Vasculitis Awareness Walk

2007-08-28T05:31:00.000-07:00

Hello Kansas City Chapter folks

We will plan to join the Walk and Scavenger Hunt sponsored by the Vasculitis Foundation on Saturday, September 22, at 9a.m. at the J.C. Nichols Fountain on the Country Club Plaza. This is a week earlier than we announced earlier, so change the date on your calendars.

Hope you can join us then.

June 9, 2007 Chapter meeting

2007-06-18T17:59:00.000-07:00

The highlight of our June meeting was a presentation by Dr. Mary Vernon. The text of her talk "Dietary Modulation of Inflammation" is linked from the title.

Once again Arlene K. took notes, which are stored at:
June 9, 2007 notes

Our September meeting will be coordinated with Vasculitis Awareness week, which is September 23-29. Meeting plans for Saturday, September 29 [changed to Sept. 22] will be announced later, but please mark that date on your calendars.

Kansas City Chapter - June 9, 2007 Meeting

2007-05-11T06:52:00.000-07:00

Our group will meet again on Saturday, June 9 from 1pm to 3pm at St. Lukes Hospital, 4401 Wornall Road in Kansas City, Missouri. The meeting room is the Mill Creek Dining Room adjacent to the cafeteria on level B2. Parking in the adjacent garage is free on Saturdays.

Link to more meeting details.

Our scheduled guest speaker, Mary C. Vernon, M.D., C.M.D., is board certified in bariatric and family medicine and is in private practice in Lawrence, Kansas. Dr. Vernon is vice president of the American Society of Bariatric Physicians and a member of the Atkins Physicians Council. She has presented research papers on low-carbohydrate diets and their use in the treatment of the metabolic syndrome, diabetes, and obesity. She has been published in the American Journal of Medicine as well as Metabolic Syndrome and Related Disorders.

Please join us on June 9 at St. Luke's Hospital.

Kansas City Chapter - March 10, 2007 meeting

2007-03-21T07:09:00.000-07:00

Our meeting of March 10 in Parkville had about 14 folks present. Once again Arlene took notes and they are available for viewing. Jerry mentioned that his daughter, Jerri, might have some yoga advice for us. She offers the following:

" ... there are ways of walking meditatively that might be helpful...bringing awareness to all the toes, inner and outer heel, noticing the shift of weight from heel to ball of foot and toes: This type of 'paying attention' tones the nervous system and is especially toning to 'proprioception,' which is the peripheral nervous system's way of sending messages back to the brain. Taking time to walk slowly and mindfully can improve balance, posture, and foot problems as well as provide an overall calming to the nervous system and mind.

In addition, lots of leg, hip and lower back (and therefore walking) problems begin in the feet. Rolling a tennis ball under the arch of the foot (can be done sitting in a chair) might be helpful.

Perhaps most importantly, taking time to sit tall or lie down and focus on breathing improves nervous system and cardiovascular health. Counting to 6 as you inhale and counting to 9 as you exhale is a very calming breath. If a 9-count exhale feels too long, shorten it to 8 or 7--the point being that a longer EXHALE calms the nerves."

Our next meeting will be from 1pm to 3pm on Saturday, June 9, in the Mill Creek Dining Room adjacent to the cafeteria in level B2 of St. Lukes Hospital in Kansas City. More on that later.

Notes from the Nov. 18 meeting are available at:
http://www.wizardofkansas.com/vf/Notes3.10.07.htm

Kansas City Chapter - Nov. 18, 2006 meeting

2007-01-10T11:09:00.000-08:00

The Kansas City Chapter of the Vasculitis Foundation met at St. Lukes Hospital in Kansas City on Saturday, Nov. 18. The next scheduled KC Chapter meeting is Sat., March 10 at 1:00 p.m. at the home of Bill Spink, 5804 Trailridge Drive in Parkville, MO. Additional information about the next meeting is at:
http://www.wizardofkansas.com/vf/Mar10MeetingAnnounce.htm

Notes from the Nov. 18 meeting are available at:
http://www.wizardofkansas.com/vf/Notes11.18.06.htm

Kansas City Chapter - Aug. 19 meeting

2006-08-23T15:55:00.000-07:00

The Kansas City Chapter of the Vasculitis Foundation met at the North Kansas City Community Center on Saturday, Aug. 19. The next scheduled KC Chapter meeting is Sat., Nov. 18 at 1:00 p.m. A location is to be determined.

Notes from the meeting are available at:
http://www.wizardofkansas.com/vf/Notes8.19.06.htm

What is Vasculitis?

2006-08-23T15:27:00.000-07:00

"Vasculitis is an inflammation of the blood vessels, which includes veins, arteries and capillaries. Also called angiitis, vasculitis causes changes in the walls of blood vessels, such as thickening, weakening, narrowing, and scarring. Types of vasulitis are:
*Behcet's syndrome *Buerger's disease *Churg Strauss syndrome
*Cryoglobulinemia *Giant cell arteritis *Henoch-Schonlein purpura
*Hypersensitivity *Microscopic polyangiitis *Polyarteritis Nodosa
*Polymayalgia Rhuematica *Rheumatoid vasculitis
*Takayasu's arteritis *Wegener's granulomatosis

International Organization

2006-07-22T12:08:00.000-07:00

The Vasculitis Foundation is "a non-profit organization dedicated to providing emotional and informational support to patients with Wegener's granulomatosis (WG) and other types of vasculitis, to assisting them and their families in understanding the disease and recovery process, to educating and raising awareness in the general public and the medical community about WG and vasculitis, and to supporting research into the cause and cure of these diseases."

http://www.vasculitisfoundation.org

Welcome

2006-07-22T11:58:00.000-07:00

Welcome to our support site, created to serve members of the Vasculitis Foundation [VF] from Missouri and Kansas. Postings to this site are restricted to members of VF who request posting privileges. If you are a VF member and want to have posting privileges please contact: Jerry Niebaum jniebaum@sunflower.com . All posts to this Web Log [BLOG] are public information and available for viewing by any persons with the Web address: http://vfkansas.blogspot.com/.