Minutes – May 9th, 2015 Meeting
The Kansas City Vasculitis
Support Group met on Saturday, May 9th in room 125 Best Conference Center,
University of Kansas Edwards Campus.
Present were Mary Tanner, Julie Tanner, Velda Atkinson, Marie Dalbey,
Glenn & Arlene Kullman, Joyce Kullman, Judy Kullman, Shannon Morgan, Chad
Gratton, Judy Harrington, Traci Marriott, Clairissa Marriott, Annette Marriott,
Linda & Jim Gibson, Jude Devonshire, Tish Varraveto, Jerry & Judy
Niebaum, and Denny & Ruth Hale. Ten
patients, and twelve caregivers.
Dr. Mireille El Ters, nephrologist
from University of Kansas Medical Center, presented an overview of renal
vasculitis. She also discussed that she
and Dr. Jason Springer were conducting a new drug (CCX168 C5a receptor
inhibitor) clinical trial study for patients with renal involvement. Dr. El Ters concluded by answering questions
from the group.
Jerry Niebaum asked patient
attendees to introduce themselves and provide a brief update on their
vasculitis health status.
Jerry announced that after ten
years he was stepping down as group leader.
Denny Hale will take over as the support group leader.
Jerry provided an overview of the
Vasculitis Foundation Facebook site located at
https://www.facebook.com/groups/vasculitisfoundation/
Joyce Kullman, Executive Director
of the Vasculitis Foundation, announced that May is Vasculitis Awareness Month.
She asked that each attendee do something to raise awareness. Joyce thanked Tish Varraveto for conducting a
tulip sale which resulted in $550 donated to the foundation. Her other announcement was that Dr. Gary
Hoffman had retired. Dr. Hoffman of the
Cleveland Clinic had been involved many years with vasculitis diagnosis,
treatment, and research.
Shannon Morgan, Patient Support
Co-ordinator of the Vasculitis Foundation talked about the 2015 International
Vasculitis Symposium in Jacksonville, Fl. from June 19 - 21st.
The next KC Support Group meeting
will be held in October, but not on the 2nd Saturday. There are too many conflicts. More details to follow.