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.

April 13, 2019 Chapter Meeting Minutes


The Kansas City VF Support Group met on Saturday, April 13, 2019 in room 130 BEST Conference Center, University of Kansas Edwards Campus.  Present were Bill Fenton, Marilyn Fenton, Sondra Schmidt, Allison Lint, Julie Tanner, Mary Tanner, Shannon Morgan, Marce Mossberg, Jana Siebel, Cindy Bultemeier, John Smith, Jim Gibson, Linda Gibson, Cheri Nutt, Laura Lafferty, Denny Hale, and Ruth Hale.

Aamir Hussain, MAPP and MD candidate class of 2019 University of Chicago Pritzker School of Medicine, spoke about Health Policy Basics and Issues Regarding Health Reform.  He concluded by answering questions from the audience.

Aamir also included a link to a webinar on Doctor - Patient relationship,  https://m.youtube.com/watch?feature=share&v=p3VkJQWFXKs and an article on Considering the Single-Payer System that he had written:  https://www.the-dermatologist.com/article/considering-single-payer-system

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

The next International VF Symposium will be held July 19 - 21, 2019 at the Hyatt-Regency in Bloomington, MN.  The next KS/MO VF Support Group meeting will be held on Saturday, September 14, 2019.

Nov 10, 2018 Meeting Minutes


The Kansas City Support Group met on Saturday, November 10, 2018 in room 175 BEST Conference Center, University of Kansas Edwards Campus.  Present were Bill Fenton, John Rizzo, Sondra Schmidt, Allison Lint, Kim Rieger, Julie Tanner, Mary Tanner, Jude Devonshire, Denny Hale, and Ruth Hale.

The group watched a VF YouTube video entitled "When to Seek Unscheduled Medical Care" presented by Susan Wilson, MD, ABEM Emergency Physician.  She is also the mother of an EGPA patient.  Dr. Wilson gave several tips to vasculitis patients.  One was that we should to try to differentiate vasculitis symptoms from other illness symptoms to assist with the doctor’s diagnosis.  She said that ER doctors appreciated hearing what treatments or medications had helped in similar situations before.  She also said patients need to make sure that they have with them a current listing of their medications, physicians with phone numbers, and any known allergies.  The group discussed ways to accomplish this, including phone apps.

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 13, 2019.  The next International VF Conference will be held July 19 - 21, 2019 in Minneapolis, MN.

Meeting Minutes, Sept 8, 2018


The Kansas City VF Support Group met on Saturday, September 8, 2018 in room 125 BEST Conference Center, University of Kansas Edwards Campus.  Present were John Rizzo, Karen Rizzo,  Allison Lint, Arlene Kullman, Joyce Kullman, Patricia Kullman, Dorothy Tighe, Mindy Manes, Rob Manes, Kim Reger, Shannon Morgan, Denny Hale, and Ruth Hale.

Dr. Jason Springer, Director KU Vasculitis Center, and Joyce Kullman, Executive Director of the Vasculitis Foundation, provided a recap of the August 4, 2018 KU Vasculitis Educational Conference.  Requests were made of attendees for feedback to address positives and negatives of the symposium. 

Dr. Springer also fielded questions in regard to the Shingrix and flu vaccines.  Joyce provided an update of the V-PPRN and announced the next VF International Vasculitis Symposium would be held July 19 – 21, 2019 at the Hyatt Regency in Bloomington, Minnesota.

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 10, 2018.