May 30, 2020 Meeting Minutes


The Kansas City Vasculitis Support Group met on Saturday, May 30, 2020 via Zoom.  Present were Dr. Jason Springer, Allison Ross, Carla Dettmer, Connie Smith, Joyce Kullman, Kimberly Flynn, Mindy Manes, Shannon Morgan, Denny Hale, and Ruth Hale.

Dr. Springer announced that he was leaving KU Medical Center and moving to Nashville, TN in mid August.  KU Med is interviewing to hire a rheumatologist to hopefully take over the vasculitis clinic.  In the interim, vasculitis patients will be assigned to various rheumatologists by vasculitis type.  Dr. Springer will email Joyce Kullman a list of the doctors for each diagnosis.  He will also send a list of specialists utilized for vasculitis patients.

Joyce Kullman spoke about the 2020 Vasculitis Foundation – University of Kansas Patient & Family Regional Conference scheduled for August 8.  The regional conference is being reorganized as a virtual event.  It is still in the planning stage.  Once plans are finalized, details will be posted on the VF web site.

Joyce also announced that approximately 700 vasculitis patients are participating in the Vasculitis COVID-19 Patient Project.  The VF and Vasculitis Patient Powered Research Network (VPPRN) have teamed up with partners in the Autoimmune Research Collaborative (ARC) to launch a new vasculitis and autoimmune COVID-19 patient study.

Joyce and Allison Ross spoke about the VF Pajama Party scheduled for Saturday, June 20th from 8 pm – 9 pm CDT.  This will be a virtual event with proceeds benefitting the VF.  Jamie Lee Curtis will be a special celebrity guest.  Tickets can be purchased at the VF web site.

Support group attendees were asked to introduce themselves and provide a brief update on their vasculitis status.

The next KC VF Support Group meeting will be next fall, maybe Saturday, October 10, 2020.  This could be a virtual meeting depending on how things are going by then.  We will announce it, and details as it gets closer.
We're going to try our first virtual Vasculitis Support Group meeting, May 30, 1pm.  Details to follow.
With all that's going on, the Local VF Support Group meeting that was scheduled for April 18, 2020 has been cancelled.  The next meeting will probably be November 14, 2020.  More info will come out on that later.  Stay safe!
The local KS/MO chapter VF meeting that was scheduled for April 11, 2020 has been moved to April 18, 2020.

Nov 9, 2019 Meeting Minutes


The Kansas City Vasculitis Support Group met on Saturday, November 9, 2019 in room 125 BEST Conference Center, University of Kansas Edwards Campus.  Present were Carla Dettmer, John Rizzo, Bill Fenton, Marilyn Fenton, Linda Gibson, Jim Gibson, Ros Manes, Denny Hale, and Ruth Hale.

The subject for the meeting was The Immune System and Autoimmune Disorders.  Attendees watched Vasculitis Treatment and Your Immune System:  The Good, the Bad, and the Encouraging video presented by Carol Langford at the 2019 Vasculitis International Symposium.  Also discussed was the book, An Elegant Defense by Matt Richtel.

It was announced that a Vasculitis Foundation video produced by a team of young adult patients with vasculitis recently earned an award as Best Short Video in the 2019 Nonprofit Connect Philly Awards.  The Young Adults with Vasculitis Look to the Future video was also viewed by attendees.

Support group attendees were asked to introduce themselves and provide a brief update on their vasculitis status.

The next KC VF Support Group meeting will be held on Saturday, April 11, 2020; same time, same place.

Sept 14, 2019 Meeting Minutes


The Kansas City Vasculitis Support Group met on Saturday, September 14, 2019 in room 125 BEST Conference Center, University of Kansas Edwards Campus.  Present were Oleta Taylor, Carla Dettmer, John Rizzo, Jana Seibel, Marcee Mossberg, Kim Flynn, Allison Ross, Mindy Manes, Denny Hale, and Ruth Hale.

The meeting focused on discussion of the 2019 Vasculitis International Symposium in July.  Attendees at the conference (Allison Ross, Mindy Manes, and Denny and Ruth Hale) discussed various topics from the symposium.  They also distributed “My Journey” journals to the support group attendees.  The Journals were designed by Suzanne DePaolis, President of the Vasulitis Foundation Board, with the idea of assisting patients to track symptoms, medications, and doctor appointments.

Support group attendees were asked to introduce themselves and provide a brief update on their vasculitis status.

The next KC VF Support Group meeting will be held on Saturday, November 9, 2019.

Sept 14 VF Chapter Meeting


The next VF Kansas City Support Group meeting will be Saturday, September 14th 2019 at the KU Edwards Campus, 12600 Quivera, Overland Park KS, at 1pm in room 125 of the BEST Conference Center.  The topic of discussion will be the 2019 Vasculitis International Symposium that was held in July in Bloomington, MN.  Inputs will be welcome from anybody that was there.