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.