Minutes - Dec 12, 2015 Meeting


The Kansas City Vasculitis Support Group met on Saturday, December 12 in room 125 BEST Conference center, University of Kansas Edwards Campus.  Present were Sondra Schmidt, Linda Gibson, Jim Gibson, Shannon Morgan, Glen Kullman, Arlene Kullman, Joyce Kullman, Denny Hale, and Ruth Hale.

Denny Hale, Chapter Leader, opened the meeting giving an update on Jerry Niebaum, the former chapter leader’s health.  At his request, Denny explained the progression of Jerry’s stage 4 Merkel Cell Carcinoma, and his recent journey from the hospital to home Hospice care.  A card was passed around for members to sign, wishing him well, and thanking him for his years of service leading the chapter.

Joyce Kullman, Vasculitis Foundation Executive Director, provided an informative presentation introducing the VF YouTube Education Channel and the Awareness Channel and webinars.  She also mentioned the Mayo Clinic (http://www.mayoclinic.org/), Cleveland Clinic (http://my.clevelandclinic.org/), and UNC Kidney Center (http://unckidneycenter.org/) websites as sources for educational information.

Joyce announced the Vasculitis Foundation received an award from Nonprofit Connect, a Kansas City based organization that works with other nonprofit organizations throughout the country to connect them to resources, education, and networking opportunities.  The VF won the award, called a Philly Award, for the Best Long Video, for work done by Ed Becker with his “Extraordinary Vasculitis Patient Stories”.

The meeting concluded with members introducing themselves and providing a brief update on their vasculitis status.
The next meeting will be March 12, 2016 at the same location.  The guest speaker will be Dr W. A. White, Ophthalmologist from the University of Kansas Medical Center.  Dr White will explain the effect of vasculitis, and the drugs we take, on our eyes.