May 2017 Meeting Minutes


The Kansas City VF Support Group met on Saturday, May 13, 2017 in room 125 BEST Conference Center, University of Kansas Edwards Campus.  Present were Glenn Kullman, Arlene Kullman, Jude Devonshire, Nancy Pifer, Dick Pifer, Bill Fenton, Marilyn Fenton, John Rizzo, Julie Tanner, Mary Tanner, Linda Gibson, Jim Gibson, Jana Sibel, Shannon Morgan, Joyce Kullman, Denny Hale, and Ruth Hale.

Dr. Jason Springer, Director of the Vasculitis Clinic, University of Kansas Medical Center, spoke about clinical trials for a new drug, Avacopan, that could possibly be a substitute for prednisone in ANCA Associated vasculitis patients.  Dr Springer also announced that the University of Kansas Medical Center has become a part of the Vasculitis Clinical Research Consortium.  He concluded by answering questions from the audience.

Joyce Kullman, Executive Director of the Vasculitis Foundation, provided information about the next International Vasculitis Patient Symposium which will be held June 23 - 25th 2017 at the Chicago Marriott O'Hare Hotel in Chicago, IL. 

Denny Hale, support group leader, led a discussion about which months to hold future support group meetings.  The group decided on May, September, and November to try and avoid summer months, bad winter weather, holidays and graduation conflicts.

Attendees were asked to introduce themselves and provide a brief update on their vasculitis status.

May Meeting, VF KC Chapter

The next meeting of the Vasculitis Foundation KC Chapter Support Group will be Saturday, May 13 2017, at the KU Edwards Campus, 12600 Quivera, Overland Park KS, at 1pm in room 125 of the BEST Conference Center.  Our speaker will be Dr Jason Springer, Director of the University of Kansas Medical Center Vasculitis Clinic.  He will speak about clinical trials for a new drug that could be a substitute for prednisone in ANCA associated vasculitis.

KC VF Mar 2017 Meeting Minutes


The Kansas City Support Group met on Saturday, March 11, 2017 in room 125 BEST Conference Center, University of Kansas Edwards Campus.  Forecast of snow caused a light attendance.  Present were Glenn Kullman, Arlene Kullman, Jude Devonshire, Sondra Schmidt, Teresa Reyes, Lupe Sabala, Jean Bussard, Joyce Kullman, Denny Hale, and Ruth Hale.

Dr. Mamatha Pasnoor, associate professor of neurology and co-director of the University of Kansas Medical Center Neuropathy Center, presented a program on Vasculitis neurology issues.  She concluded by answering questions from the audience.

Joyce Kullman, Executive Director of the Vasculitis Foundation, explained more about the next International Vasculitis Patient Symposium, to be held June 23 - 25th 2017 at the Chicago Marriott O'Hare Hotel in Chicago, IL. 

Attendees were asked to introduce themselves and provide a brief update on their vasculitis status.  With very light attendance on a snowy winter month, we discussed reducing the number of meetings we have per year from four, to three.   To avoid trying to have speakers during  the holiday and winter months, we discussed having meetings with speakers in October and April, and just a social gathering in January if weather permits.  Let us know what you think.  We hope to discuss this further, and make a decision at the next meeting.

The next Kansas/Missouri chapter meeting will be Saturday, May 13, 2017.  Dr. Jason Springer, Director of the Vasculitis Clinic, University of Kansas Medical Center, will be the speaker.

March Chapter Meeting


The next meeting of the KC VF Chapter Support Group will be Saturday, March 11 2017, at the KU Edwards Campus, 12600 Quivera, Overland Park KS, at 1pm in room 125 of the BEST Conference Center.  Our speaker will be Dr Mamatha Pasnoor, Assistant Professor and Co-Director of the Neuropathy Center at the University of Kansas Medical Center.  She will speak about neurology issues with vasculitis patients.

VF KC Chapter Dec 2017 Meeting Minutes


The Kansas City Support Group met on Saturday, December 10, 2016 in room 125 BEST Conference Center, University of Kansas Edwards Campus.  Present were Glenn & Arlene Kullman, Jude Devonshire, Tish Varraveto, Crystal Boucher, Sondra Schmidt, Shannon Morgan, Joyce Kullman and Denny & Ruth Hale.

Denny Hale, support group leader, showed two videos from the VF educational video library focusing on Complementary and Alternative Medicine  (CAM) for vasculitis patients.  The first was   Complementary Medicine and Vasculitis Patients presented by Dr. Brent Bauer and the second was Dr. Julie McGregor on Alternative Therapies.  Following the viewing, attendees participated in discussion around the topics.

Joyce Kullman, Executive Director of the Vasculitis Foundation, announced the next international VF patient symposium would be held June 23 - 25th, 2017 in Chicago, IL. 

Attendees were asked to introduce themselves and provide a brief update on their vasculitis status.  The next Kansas/Missouri chapter meeting will be Saturday, March 11, 2017 .

VF KC Chapter Meeting


The next meeting of the VF Kansas City Chapter will be December 10, 2016 from 1-3pm at the University of Kansas Edwards Campus, BEST Conference Center, 12600 Quivera, Overland Park Kansas, room 125.

The topic of discussion will be Complementary and Alternative Medicine (CAM) for Vasculitis patients.  We’ll have a couple of videos to watch with doctors from Mayo Clinic and the University of North Carolina, then discussion and personal stories around the topic.

Victory Over Vasculitis 5K

There will be a 5K walk/run, a benefit for the Vasculitis Foundation, put on Saturday, December 3, 2016 at the Liberty North High School, 1000 NE 104th St, Liberty, MO 64068.  Registration is at http://tinyurl.com/VictoryOverVasculitis5k.  Packets are available for pickup at 7:50am, welcome & introductions at 8:45am, start at 9:30am