tag:blogger.com,1999:blog-315095662024-03-06T23:07:38.442-08:00Vasculitis Foundation - Kansas City ChapterThis BLOG is created and supported by volunteers who work with the Vasculitis Foundation to support anyone with this disease.Unknownnoreply@blogger.comBlogger102125tag:blogger.com,1999:blog-31509566.post-19175753772293742492020-10-18T07:49:00.000-07:002020-10-18T07:49:06.660-07:00Oct 10, 2020 KC VF Support Group Meeting Minutes<p>The Kansas City Vasculitis Support Group met on Saturday,
October 10, 2020 via Zoom. There was no
formal program. However, Joyce Kullman,
Executive Director of the Vasculitis Foundation, announced the 2020 Vasculitis
Virtual Conferences. The Newly Diagnosed
Patients and Their Families Conference will be on Saturday, October 31,
2020. The Advanced Patients and Their
Families Conference will be on Saturday, November 14, 2020. The Caring for the Caregivers Conference will
be on Saturday, December 5, 2020. Registration
is required and the cost is $30 per
conference.</p>
<p class="MsoNormal">Joyce also indicated that the next VF Road to Wellness
Webinar entitled “Learn the Latest about COVID-19” would be on October 19,
2020.<span style="mso-spacerun: yes;"> </span>For further information about each
event, you may check the Vasculitis Foundation website.</p>
<p class="MsoNormal">The University of Kansas Medical Center is continuing to
search and interview candidates to head up the Vasculitis Clinic at the
hospital after the departure of Dr Springer.</p>
<p class="MsoNormal">Support group attendees were asked to introduce themselves
and provide a brief update on their vasculitis status and how COVID-19 was
impacting them.</p>
<p class="MsoNormal">The next KC VF Support Group meeting will be in the spring
of 2021.<span style="mso-spacerun: yes;"> </span>This could be a virtual meeting
depending on how things are going by then.<span style="mso-spacerun: yes;">
</span>We will announce it, and details as it gets closer.</p>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-72308868962308942442020-06-05T12:43:00.000-07:002020-06-05T12:43:06.002-07:00May 30, 2020 Meeting Minutes
<br />
The Kansas City Vasculitis Support Group met on Saturday,
May 30, 2020 via Zoom.<span style="mso-spacerun: yes;"> </span>Present were Dr.
Jason Springer, Allison Ross, Carla Dettmer, Connie Smith, Joyce Kullman,
Kimberly Flynn, Mindy Manes, Shannon Morgan, Denny Hale, and Ruth Hale.<br />
<br />
Dr. Springer announced that he was leaving KU Medical Center
and moving to Nashville, TN in mid August.<span style="mso-spacerun: yes;">
</span>KU Med is interviewing to hire a rheumatologist to hopefully take over
the vasculitis clinic.<span style="mso-spacerun: yes;"> </span>In the interim, vasculitis
patients will be assigned to various rheumatologists by vasculitis type.<span style="mso-spacerun: yes;"> </span>Dr. Springer will email Joyce Kullman a list
of the doctors for each diagnosis.<span style="mso-spacerun: yes;"> </span>He
will also send a list of specialists utilized for vasculitis patients. <br />
<br />
Joyce Kullman spoke about the 2020 Vasculitis Foundation –
University of Kansas Patient & Family Regional Conference scheduled for
August 8.<span style="mso-spacerun: yes;"> </span>The regional conference is
being reorganized as a virtual event.<span style="mso-spacerun: yes;"> </span>It
is still in the planning stage.<span style="mso-spacerun: yes;"> </span>Once
plans are finalized, details will be posted on the VF web site.<br />
<br />
Joyce also announced that approximately 700 vasculitis
patients are participating in the Vasculitis COVID-19 Patient Project.<span style="mso-spacerun: yes;"> </span>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.<br />
<br />
Joyce and Allison Ross spoke about the VF Pajama Party
scheduled for Saturday, June 20<sup>th</sup> from 8 pm – 9 pm CDT.<span style="mso-spacerun: yes;"> </span>This will be a virtual event with proceeds
benefitting the VF.<span style="mso-spacerun: yes;"> </span>Jamie Lee Curtis
will be a special celebrity guest.<span style="mso-spacerun: yes;">
</span>Tickets can be purchased at the VF web site. <br />
<br />
Support group attendees were asked to introduce themselves
and provide a brief update on their vasculitis status.<br />
<br />
The next KC VF Support Group meeting will be next fall,
maybe Saturday, October 10, 2020.<span style="mso-spacerun: yes;"> </span>This
could be a virtual meeting depending on how things are going by then.<span style="mso-spacerun: yes;"> </span>We will announce it, and details as it gets
closer.<br />
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-68219854918232158112020-05-15T14:48:00.002-07:002020-05-15T14:48:48.890-07:00We're going to try our first virtual Vasculitis Support Group meeting, May 30, 1pm. Details to follow.Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-85236449106723248442020-03-17T11:40:00.001-07:002020-03-17T11:40:08.097-07:00With all that's going on, the Local VF Support Group meeting that was scheduled for April 18, 2020 has been cancelled. The next meeting will probably be November 14, 2020. More info will come out on that later. Stay safe!Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-69941760228947657982020-02-20T05:59:00.001-08:002020-02-20T05:59:08.778-08:00The local KS/MO chapter VF meeting that was scheduled for April 11, 2020 has been moved to April 18, 2020.Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-58668197823623659042019-11-17T08:10:00.001-08:002019-11-17T08:10:20.887-08:00Nov 9, 2019 Meeting Minutes
<br />
The Kansas City Vasculitis Support Group met on Saturday,
November 9, 2019 in room 125 BEST Conference Center, University of Kansas
Edwards Campus.<span style="mso-spacerun: yes;"> </span>Present were Carla
Dettmer, John Rizzo, Bill Fenton, Marilyn Fenton, Linda Gibson, Jim Gibson, Ros
Manes, Denny Hale, and Ruth Hale.<br />
<br />
The subject for the meeting was The Immune System and
Autoimmune Disorders.<span style="mso-spacerun: yes;"> </span>Attendees watched <i style="mso-bidi-font-style: normal;">Vasculitis Treatment and Your Immune
System:<span style="mso-spacerun: yes;"> </span>The Good, the Bad, and the
Encouraging</i> video presented by Carol Langford at the 2019 Vasculitis
International Symposium.<span style="mso-spacerun: yes;"> </span>Also discussed
was the book, <i style="mso-bidi-font-style: normal;">An Elegant Defense</i> by
Matt Richtel.<br />
<br />
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.<span style="mso-spacerun: yes;"> </span>The Young Adults with Vasculitis <i style="mso-bidi-font-style: normal;">Look to the Future</i> video was also viewed
by attendees.<br />
<br />
Support group attendees were asked to introduce themselves
and provide a brief update on their vasculitis status.<br />
<br />
The next KC VF Support Group meeting will be held on
Saturday, April 11, 2020; same time, same place. <br />
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-30884693853388526912019-09-18T10:22:00.002-07:002019-09-18T10:22:23.901-07:00Sept 14, 2019 Meeting Minutes
<br />
The Kansas City Vasculitis Support Group met on Saturday,
September 14, 2019 in room 125 BEST Conference Center, University of Kansas
Edwards Campus.<span style="mso-spacerun: yes;"> </span>Present were Oleta
Taylor, Carla Dettmer, John Rizzo, Jana Seibel, Marcee Mossberg, Kim Flynn,
Allison Ross, Mindy Manes, Denny Hale, and Ruth Hale.<br />
<br />
The meeting focused on discussion of the 2019 Vasculitis
International Symposium in July.<span style="mso-spacerun: yes;">
</span>Attendees at the conference (Allison Ross, Mindy Manes, and Denny and
Ruth Hale) discussed various topics from the symposium.<span style="mso-spacerun: yes;"> </span>They also distributed “My Journey” journals
to the support group attendees.<span style="mso-spacerun: yes;"> </span>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.<br />
<br />
Support group attendees were asked to introduce
themselves and provide a brief update on their vasculitis status.<br />
<br />
The next KC VF Support Group meeting will be held on
Saturday, November 9, 2019. <br />
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-76225640815698134882019-08-21T12:20:00.004-07:002019-08-21T12:20:27.896-07:00Sept 14 VF Chapter Meeting
<br />
The next VF Kansas City Support Group meeting will be
Saturday, September 14<sup>th</sup> 2019 at the KU Edwards Campus, 12600
Quivera, Overland Park KS, at 1pm in room 125 of the BEST Conference
Center.<span style="mso-spacerun: yes;"> </span>The topic of discussion will be
the 2019 Vasculitis International Symposium that was held in July in
Bloomington, MN.<span style="mso-spacerun: yes;"> </span>Inputs will be welcome
from anybody that was there.<br />
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-81313004461639463552019-04-19T18:00:00.000-07:002019-04-19T18:00:30.303-07:00April 13, 2019 Chapter Meeting Minutes
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The Kansas City VF Support Group met on Saturday, April 13, 2019 in room
130 BEST Conference Center, University of Kansas Edwards Campus.<span style="margin: 0px;"> </span>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.</span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">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.<span style="margin: 0px;"> </span>He concluded by
answering questions from the audience. </span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Aamir also included a link to a webinar on Doctor - Patient
relationship,<span style="margin: 0px;"> </span><a href="https://m.youtube.com/watch?feature=share&v=p3VkJQWFXKs"><span style="color: blue;">https://m.youtube.com/watch?feature=share&v=p3VkJQWFXKs</span></a>
and an article on Considering the Single-Payer System that he had written:<span style="margin: 0px;"> </span><a href="https://www.the-dermatologist.com/article/considering-single-payer-system"><span style="color: blue;">https://www.the-dermatologist.com/article/considering-single-payer-system</span></a>
</span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Attendees were asked to introduce themselves and provide a brief update
on their vasculitis status. </span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The next International VF Symposium will be held July 19 - 21, 2019 at
the Hyatt-Regency in Bloomington, MN.<span style="margin: 0px;">
</span>The next KS/MO VF Support Group meeting will be held on Saturday,
September 14, 2019.</span><u></u></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: Calibri;"></span>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-15867551765126012212018-11-20T09:53:00.002-08:002018-11-20T09:53:48.350-08:00Nov 10, 2018 Meeting Minutes
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The Kansas City Support Group met on Saturday, November 10, 2018 in room
175 BEST Conference Center, University of Kansas Edwards Campus.<span style="margin: 0px;"> </span>Present were Bill Fenton, John Rizzo, Sondra
Schmidt, Allison Lint, Kim Rieger, Julie Tanner, Mary Tanner, Jude Devonshire,
Denny Hale, and Ruth Hale.</span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The group watched a VF YouTube video entitled "When to Seek
Unscheduled Medical Care" presented by Susan Wilson, MD, ABEM Emergency
Physician.<span style="margin: 0px;"> </span>She is also the mother of an
EGPA patient.<span style="margin: 0px;"> </span>Dr. Wilson gave several
tips to vasculitis patients.<span style="margin: 0px;"> </span>One was
that we should to try to differentiate vasculitis symptoms from other illness
symptoms to assist with the doctor’s diagnosis.<span style="margin: 0px;">
</span>She said that ER doctors appreciated hearing what treatments or
medications had helped in similar situations before.<span style="margin: 0px;"> </span>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.<span style="margin: 0px;"> </span>The
group discussed ways to accomplish this, including phone apps.</span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Attendees were asked to introduce themselves and provide a brief update
on their vasculitis status. </span></span></div>
<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 115%; margin: 0px;">The
next KC VF Support Group meeting will be held on Saturday, April 13, 2019.<span style="margin: 0px;"> </span>The next International VF Conference will be
held July 19 - 21, 2019 in Minneapolis, MN.</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-13438312608167665522018-10-10T08:39:00.001-07:002018-10-10T08:39:49.568-07:00November Chapter Meeting<span style="font-family: "Times New Roman","serif"; font-size: 12pt; margin: 0px;"><img border="0" id="_x0000_i1025" name="ACCOUNT.IMAGE.1007" src="http://files.constantcontact.com/b532f4f7001/018f0d84-7355-484a-bbcd-d4e4686523fb.png" width="600" /></span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-44203742219840011292018-09-14T13:05:00.000-07:002018-09-14T13:05:03.925-07:00Meeting Minutes, Sept 8, 2018
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The Kansas City VF Support Group met on Saturday, September 8, 2018 in
room 125 BEST Conference Center, University of Kansas Edwards Campus.<span style="margin: 0px;"> </span>Present were John Rizzo, Karen Rizzo, <span style="margin: 0px;"> </span>Allison Lint, Arlene Kullman, Joyce Kullman, Patricia
Kullman, Dorothy Tighe, Mindy Manes, Rob Manes, Kim Reger, Shannon Morgan, Denny
Hale, and Ruth Hale.</span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">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.<span style="margin: 0px;">
</span>Requests were made of attendees for feedback to address positives and
negatives of the symposium.<span style="margin: 0px;"> </span></span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Dr. Springer also fielded questions in regard to the Shingrix and flu
vaccines.<span style="margin: 0px;"> </span>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. </span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Attendees were asked to introduce themselves and provide a brief update
on their vasculitis status. </span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The next KC VF Support Group meeting will be held on Saturday, November
10, 2018.</span><u></u></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: Calibri;"></span>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-74634020367429928242018-04-15T19:00:00.000-07:002018-04-15T19:09:46.886-07:00April 2018 Meeting Minutes<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">The Kansas City Support Group met on Saturday, April 14, 2018 in room
125 BEST Conference Center, University of Kansas Edwards Campus.<span style="margin: 0px;"> </span>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.</span></span></div>
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Katie Strahan, Program Director at Turning Point, gave a presentation
about services and programs available to patients and families living with
chronic illnesses.<span style="margin: 0px;"> </span>She distributed
calendars from the organization.<span style="margin: 0px;"> </span>Katie
concluded by answering questions from the audience.</span></span></div>
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Ruth Hale read a tribute to Glenn Kullman who had passed away in
January.<span style="margin: 0px;"> </span>Arlene Kullman was also
recognized for her volunteer work with the Vasculitis Foundation and KC VF
chapter.</span></span></div>
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Joyce Kullman, executive director of the Vasculitis Foundation,
announced that the KU VF Patient & Family Conference would be held on
Saturday, August 4<sup><span style="font-size: x-small;">th</span></sup>, 2018 at the University of Kansas Edwards
Campus.<span style="margin: 0px;"> </span>Speakers and topics are being
lined up and registration will be opening soon.<span style="margin: 0px;">
</span>Check on the VF website for details.</span></span></div>
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Attendees were asked to introduce themselves and provide a brief update
on their vasculitis status. </span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">The next KC VF Support Group meeting will be held on Saturday, September
8, 2018.</span><u></u></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: "calibri";"></span>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-51777238424320497882018-02-01T09:08:00.003-08:002018-02-01T09:08:37.212-08:00April 14th Meeting<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; line-height: 115%; margin: 0px;">The
speaker for our April 14<sup>th</sup> 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.<span style="margin: 0px;"> </span>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.</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-76276899027439512932017-11-15T09:35:00.002-08:002017-11-15T09:37:38.469-08:00Nov 11 KC VF Chapter Meeting Minutes<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">The Kansas City Support Group met on Saturday, November 11, 2017 in room
125 BEST Conference Center, University of Kansas Edwards Campus.<span style="margin: 0px;"> </span>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.</span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Jude Devonshire presented a short power point program about Yoga As A
Tool When You Have Vasculitis.<span style="margin: 0px;"> </span>She then
led the attendees in chair yoga exercises.<span style="margin: 0px;">
</span>She concluded by answering questions from the audience.</span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Joyce Kullman, Executive Director of the Vasculitis Foundation, provided
updates from the American College of Rheumatology annual meeting and the
Vasculitis Foundation.</span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Allison Lint discussed her new Violin for Vasculitis Facebook live
chats.<span style="margin: 0px;"> </span>Sundays at 7 p.m. CST are geared
towards patients with rare diseases.<span style="margin: 0px;">
</span>Thursdays at 7 p.m. CST are open to the public for a recital feed.</span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Attendees were asked to introduce themselves and provide a brief update
on their vasculitis status. </span></span></div>
<br />
<div style="margin: 0px 0px 13.33px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">The next KC VF Support Group meeting will be held on Saturday, April 14,
2018.</span><u></u></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: "calibri";"></span>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-74906562923670416562017-09-16T15:15:00.000-07:002017-09-16T15:15:16.933-07:00KS/MO VF Chapter Meeting Sept 2017
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The Kansas City VF Support Group met on Saturday, September 9, 2017 in
room 125 BEST Conference Center, University of Kansas Edwards Campus.<span style="margin: 0px;"> </span>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.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Dr. Jason Springer, Director of the Vasculitis Clinic, University of
Kansas Medical Center, reported about Research and Fellowship Advances Funded
by the Vasculitis Foundation.<span style="margin: 0px;"> </span>He
originally presented this at the 2017 International Vasculitis Symposium in Chicago.<span style="margin: 0px;"> </span>He concluded by answering questions from the
audience.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Allison Lint, founder of Violin-4-Vasculitis, reported on the 2017
International Vasculitis Symposium from a patient's perspective.<span style="margin: 0px;"> </span>She also spoke about co-leading the young
adult patient breakout session at the symposium.<span style="margin: 0px;"> </span>Allison will be serving as a mentor to young
people dealing with vasculitis.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Attendees were asked to introduce themselves and provide a brief update
on their vasculitis status. </span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The next KC VF Support Group meeting will be held on Saturday, November
11, 2017.</span><u></u></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: Calibri;"></span>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-83647030346674625162017-08-09T18:26:00.000-07:002017-08-09T18:26:07.008-07:00VF KS/MO Chapter Sept Meeting
<br />
<div style="margin: 0px;">
<span style="color: black; margin: 0px;"><span style="font-family: Calibri;">The next meeting of the KC VF
Chapter Support Group will be Saturday, September 9, 2017, at the KU Edwards
Campus, 12600 Quivera, Overland Park KS, at 1pm in room 125 of the BEST
Conference Center. Our speakers will be Dr. Jason Springer, giving a
presentation he gave at the symposium in Chicago about <i style="mso-bidi-font-style: normal;">Research and Fellowship Advances Funded by the VF</i>, and Allison Lint
talking about her experience as a patient at the symposium.</span></span></div>
<br />
<div style="margin: 0px;">
<span style="color: black; margin: 0px;"><span style="font-family: Calibri;">NOTE:<span style="margin: 0px;"> </span>As we agreed in May, this year’s meetings
will be September 9, 2017; November 11, 2017 and April 14, 2018, rather than
Oct, Dec, Mar & May as we’ve done in the past.</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: Calibri;"></span>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-91170391192012780572017-05-14T14:50:00.001-07:002017-07-19T17:33:18.665-07:00May 2017 Meeting Minutes<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">The Kansas City VF Support Group met on Saturday, May 13, 2017 in room
125 BEST Conference </span></span><span style="margin: 0px;"><span style="font-family: "calibri";">Center, University of Kansas Edwards Campus.</span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span><span style="font-family: "calibri";">Present were Glenn Kullman, Arlene Kullman,
Jude Devonshire, Nancy Pifer, Dick Pifer, Bill Fenton, Marilyn Fenton, John Rizzo,
Julie Tanner, Mary Tanner, Linda Gibson, Jim Gibson, Jana Sibel, Shannon
Morgan, Joyce Kullman, Denny Hale, and Ruth Hale.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Dr. Jason Springer, Director of the Vasculitis Clinic, University of
Kansas Medical Center, spoke about clinical trials for a new drug, Avacopan,
that could possibly be a substitute for prednisone in ANCA Associated
vasculitis patients.</span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span><span style="font-family: "calibri";">Dr Springer also
announced that the University of Kansas Medical Center has become a part of the
Vasculitis Clinical Research Consortium.</span><span style="margin: 0px;"><span style="font-family: "calibri";">
</span></span><span style="font-family: "calibri";">He concluded by answering questions from the audience.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Joyce Kullman, Executive Director of the Vasculitis Foundation, provided
information about the next International Vasculitis Patient Symposium which
will be held June 23 - 25th 2017 at the Chicago </span></span><span style="margin: 0px;"><span style="font-family: "calibri";">Marriott O'Hare Hotel in Chicago,
IL.</span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Denny Hale, support group leader, led a discussion about which months to
hold future support group meetings.</span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span><span style="font-family: "calibri";">The
group decided on April, September, and November to try and avoid summer months,
bad winter weather, holidays and graduation conflicts.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Attendees were asked to introduce themselves and provide a brief update
on their vasculitis status. </span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-32767954205497690032017-04-18T06:50:00.000-07:002017-04-18T06:50:25.299-07:00May Meeting, VF KC Chapter<span style="font-family: "Calibri","sans-serif"; font-size: 11pt; margin: 0px;">The next meeting of the Vasculitis Foundation KC
Chapter Support Group will be Saturday, May 13 2017, at the KU Edwards Campus,
12600 Quivera, Overland Park KS, at 1pm in room 125 of the BEST Conference
Center.<span style="margin: 0px;"> </span>Our speaker will be Dr Jason
Springer, Director of the University of Kansas Medical Center Vasculitis
Clinic.<span style="margin: 0px;"> </span>He will speak about clinical
trials for a new drug that could be a substitute for prednisone in ANCA associated
vasculitis.</span><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-39802007121260008162017-03-12T10:59:00.003-07:002017-03-12T10:59:40.495-07:00KC VF Mar 2017 Meeting Minutes
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The Kansas City Support Group met on Saturday, March 11, 2017 in room
125 BEST Conference Center, University of Kansas Edwards Campus.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Forecast of snow caused a light
attendance.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Present were Glenn Kullman,
Arlene Kullman, Jude Devonshire, Sondra Schmidt, Teresa Reyes, Lupe Sabala,
Jean Bussard, Joyce Kullman, Denny Hale, and Ruth Hale.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Dr. Mamatha Pasnoor, associate professor of neurology and co-director of
the University of Kansas Medical Center Neuropathy Center, presented a program
on Vasculitis neurology issues.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She
concluded by answering questions from the audience.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Joyce Kullman, Executive Director of the Vasculitis Foundation,
explained more about the next International Vasculitis Patient Symposium, to be
held June 23 - 25th 2017 at the Chicago Marriott O'Hare Hotel in Chicago,
IL.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">Attendees were asked to introduce themselves and provide a brief update
on their vasculitis status.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">With very
light attendance on a snowy winter month, we discussed reducing the number of
meetings we have per year from four, to three.</span><span style="margin: 0px;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">To avoid trying to have speakers during</span><span style="margin: 0px;"><span style="font-family: Calibri;">
</span></span><span style="font-family: Calibri;">the holiday and winter months, we discussed having meetings with
speakers in October and April, and just a social gathering in January if
weather permits.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Let us know what you
think.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">We hope to discuss this further,
and make a decision at the next meeting. </span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: Calibri;">The next Kansas/Missouri chapter meeting will be Saturday, May 13,
2017.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Dr. Jason Springer, Director of
the Vasculitis Clinic, University of Kansas Medical Center, will be the
speaker.</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-40337938227480170742017-02-12T07:48:00.001-08:002017-02-12T07:48:27.018-08:00March Chapter Meeting
<br />
<div style="margin: 0px;">
<span style="font-family: Calibri;">The next meeting of the KC VF Chapter Support Group will
be Saturday, March 11 2017, at the KU Edwards Campus, 12600 Quivera, Overland
Park KS, at 1pm in room 125 of the BEST Conference Center.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">Our speaker will be Dr Mamatha Pasnoor, Assistant
Professor and Co-Director of the Neuropathy Center at the University of Kansas
Medical Center.</span><span style="margin: 0px;"><span style="font-family: Calibri;"> </span></span><span style="font-family: Calibri;">She will speak about
neurology issues with vasculitis patients.</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-37495393723559044592016-12-26T13:57:00.001-08:002016-12-26T14:00:17.260-08:00VF KC Chapter Dec 2017 Meeting Minutes<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">The Kansas City Support Group met on Saturday, December 10, 2016 in room
125 BEST Conference Center, University of Kansas Edwards Campus.</span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span><span style="font-family: "calibri";">Present were Glenn & Arlene Kullman, Jude
Devonshire, Tish Varraveto, Crystal Boucher, Sondra Schmidt, Shannon Morgan,
Joyce Kullman and Denny & Ruth Hale.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Denny Hale, support group leader, showed two videos from the VF educational video library focusing on
Complementary and Alternative Medicine </span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span><span style="font-family: "calibri";">(CAM) for vasculitis patients.</span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span><span style="font-family: "calibri";">The first was
Complementary Medicine and Vasculitis Patients presented by Dr. Brent Bauer and
the second was Dr. Julie McGregor on Alternative Therapies.</span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span><span style="font-family: "calibri";">Following the viewing, attendees participated
in discussion around the topics.</span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Joyce Kullman, Executive Director of the Vasculitis Foundation,
announced the next international VF patient symposium would be held June 23 -
25</span><sup><span style="font-family: "calibri"; font-size: x-small;">th</span></sup><span style="font-family: "calibri";">, 2017 in Chicago, IL.</span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="margin: 0px;"><span style="font-family: "calibri";">Attendees were asked to introduce themselves and provide a brief update
on their vasculitis status.</span><span style="margin: 0px;"><span style="font-family: "calibri";"> </span></span><span style="font-family: "calibri";">The next
Kansas/Missouri chapter meeting will be Saturday, March 11, 2017 .</span></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-11244849348330008402016-11-21T07:30:00.003-08:002016-11-28T07:30:17.934-08:00VF KC Chapter Meeting<br />
<div style="margin: 0px;">
<span style="font-family: "calibri"; font-size: large;">The next meeting of the VF Kansas City Chapter will be
December 10, 2016 from 1-3pm at the University of Kansas Edwards Campus, BEST
Conference Center, 12600 Quivera, Overland Park Kansas, room 125.</span></div>
<span style="font-size: large;"></span><br />
<div style="margin: 0px;">
<span style="font-family: "calibri"; font-size: large;">The topic of discussion will be Complementary and Alternative
Medicine (CAM) for Vasculitis patients.</span><span style="margin: 0px;"><span style="font-family: "calibri"; font-size: large;">
</span></span><span style="font-family: "calibri"; font-size: large;">We’ll have a couple of videos to watch with doctors from Mayo Clinic and
the University of North Carolina, then discussion and personal stories around
the topic.</span></div>
<div style="margin: 0px;">
<span style="font-family: "calibri";"><br /></span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-70692344651080238322016-11-09T19:04:00.001-08:002016-11-09T19:04:47.809-08:00Victory Over Vasculitis 5KThere will be a 5K walk/run, a benefit for the Vasculitis Foundation, put on Saturday, December 3, 2016 at the Liberty North High School, 1000 NE 104th St, Liberty, MO 64068. Registration is at http://tinyurl.com/VictoryOverVasculitis5k. Packets are available for pickup at 7:50am, welcome & introductions at 8:45am, start at 9:30amDennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.comtag:blogger.com,1999:blog-31509566.post-82363937821071639692016-10-17T16:10:00.003-07:002016-10-17T16:10:36.525-07:00October 2016 VF Chapter Meeting Minutes
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="font-size: 12pt; line-height: 115%; margin: 0px;">The
Kansas City Support Group met on Saturday, October 15, 2016 in room 125 BEST
Conference Center, University of Kansas Edwards Campus.<span style="margin: 0px;"> </span>Present were Brad Yates, Debbie Yates, Paula
Yates, Glenn Kullman, Arlene Kullman, Linda Gibson, Jim Gibson, Julie Tanner,
Mary Tanner, Jude Devonshire,<span style="margin: 0px;"> </span>Marie
Dalbey, Tish Varraveto, Michael Brock, Jana Seibel, Teresa Reyes, Lupe Sabala,
Shannon Morgan, Joyce Kullman, Denny and Ruth Hale.</span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="font-size: 12pt; line-height: 115%; margin: 0px;">Dr.
Jason Springer, Director of the Vasculitis Clinic, University of Kansas Medical
Center, discussed the possibility of KU Med participating in a phase 3 study
for a new drug in the trial stages that could be a prednisone replacement for
GPA and MPA patients.<span style="margin: 0px;"> </span>Dr. Springer also
asked for feedback regarding the August regional patient symposium presented by
KU Med and the Vasculitis Foundation.<span style="margin: 0px;"> </span>He
led the discussion on items that went well at the conference and areas for
improvement. </span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="font-size: 12pt; line-height: 115%; margin: 0px;">Joyce
Kullman, Executive Director of the Vasculitis Foundation, announced the next
international VF patient symposium would be held next summer in Chicago,
IL.<span style="margin: 0px;"> </span>The exact dates and hotel location
would be revealed in a couple of months.<span style="margin: 0px;">
</span>She also noted that on Thursday, October 20th at 8 am CDT,<span style="margin: 0px;"> </span>Dr. Richard Watts would be presenting a VF
Roadmap to Wellness Webinar titled, "Focus on ANCA-associated
Vasculitis."<span style="margin: 0px;"> </span>She shared there will
be a 5K walk/run benefiting the VF on December 3rd at North Kansas City High
School.<span style="margin: 0px;"> </span></span></div>
<br />
<div style="margin: 0px 0px 13px; word-break: break-all;">
<span style="font-size: 12pt; line-height: 115%; margin: 0px;">Attendees
were asked to introduce themselves and provide a brief update on their
vasculitis status.<span style="margin: 0px;"> </span>The next
Kansas/Missouri chapter meeting will be Saturday, December 10th.</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Dennyhttp://www.blogger.com/profile/09805020961957198449noreply@blogger.com