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.

April 2018 Meeting Minutes


The Kansas City Support Group met on Saturday, April 14, 2018 in room 125 BEST Conference Center, University of Kansas Edwards Campus.  Present were Bill Fenton, Marilyn Fenton, John Rizzo, Karen Rizzo, Linda Gibson, Jim Gibson, Sondra Schmidt, Ben Wilson, Allison Lint, Arlene Kullman, Joyce Kullman, Denny Hale, and Ruth Hale.
Katie Strahan, Program Director at Turning Point, gave a presentation about services and programs available to patients and families living with chronic illnesses.  She distributed calendars from the organization.  Katie concluded by answering questions from the audience.
Ruth Hale read a tribute to Glenn Kullman who had passed away in January.  Arlene Kullman was also recognized for her volunteer work with the Vasculitis Foundation and KC VF chapter.
Joyce Kullman, executive director of the Vasculitis Foundation, announced that the KU VF Patient & Family Conference would be held on Saturday, August 4th, 2018 at the University of Kansas Edwards Campus.  Speakers and topics are being lined up and registration will be opening soon.  Check on the VF website for details.
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, September 8, 2018.

April 14th Meeting

The speaker for our April 14th 2018 Vasculitis Support Group meeting will be Katie Strahan, Program Coordinator at Turning Point, telling about the programs available at their center for hope & healing.  Turning Point, a program of the University of Kansas Hospital, offers innovative, educational and comprehensive support programs at no charge, for patients and family touched by serious or chronic illness.

Nov 11 KC VF Chapter Meeting Minutes


The Kansas City Support Group met on Saturday, November 11, 2017 in room 125 BEST Conference Center, University of Kansas Edwards Campus.  Present were Jude Devonshire, Bill Fenton, Marilyn Fenton, John Rizzo, Linda Gibson, Jim Gibson, , Allison Lint, Brian Ross, Fran Totta, Richard Gorell, Julie Tanner, Mary Tanner, Sondra Schmidt, Crystal Boucher, Glenn Kullman, Arlene Kullman, Joyce Kullman, Denny Hale, and Ruth Hale.

Jude Devonshire presented a short power point program about Yoga As A Tool When You Have Vasculitis.  She then led the attendees in chair yoga exercises.  She concluded by answering questions from the audience.

Joyce Kullman, Executive Director of the Vasculitis Foundation, provided updates from the American College of Rheumatology annual meeting and the Vasculitis Foundation.

Allison Lint discussed her new Violin for Vasculitis Facebook live chats.  Sundays at 7 p.m. CST are geared towards patients with rare diseases.  Thursdays at 7 p.m. CST are open to the public for a recital feed.

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 14, 2018.

KS/MO VF Chapter Meeting Sept 2017


The Kansas City VF Support Group met on Saturday, September 9, 2017 in room 125 BEST Conference Center, University of Kansas Edwards Campus.  Present were Jude Devonshire, Bill Fenton, Marilyn Fenton, John Rizzo, Linda Gibson, Jim Gibson, Shannon Morgan, Allison Lint, Marilyn Loparto, Amy Frahm, Janie Frahm, Madyson Mildward, Sherry Mason, Steve Mason, Denny Hale, and Ruth Hale.

Dr. Jason Springer, Director of the Vasculitis Clinic, University of Kansas Medical Center, reported about Research and Fellowship Advances Funded by the Vasculitis Foundation.  He originally presented this at the 2017 International Vasculitis Symposium in Chicago.  He concluded by answering questions from the audience.

Allison Lint, founder of Violin-4-Vasculitis, reported on the 2017 International Vasculitis Symposium from a patient's perspective.  She also spoke about co-leading the young adult patient breakout session at the symposium.  Allison will be serving as a mentor to young people dealing with vasculitis.

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 11, 2017.