In attendance:
Michele & Cory Tiedeman
Arlene & Glenn Kullman
Joyce Kullman
Bob & Sharon Schoonover
Denny & Ruth Hale
Jerry & Judy Niebaum
Kathy Conrardy
Shannon Morgan
Sondra Schmidt
Kelly Dougherty
Jerry started the meeting by welcoming the group.
Shannon Morgan with the Vasculitis Foundation let everyone know that
her duties at the VF is coordinator/patient support and that you are welcome to
contact her at any time.
Joyce Kullman, director with the VF, reported that the VF has funded 4
research studies – 1 on CNV with focus on children and early diagnosis, 1 on
micro particles, 1 on micro polyangiitis and 1 on micro RNA. The four are based out of the US, Canada,
Germany and England. The research
program grants are supported by a vasculitis science advisory board and the
process of choosing who receives the grants can take up to 4 months.
Joyce talked about the VF conference on July 12th to 14th
in Philadelphia, PA. It
starts Friday the 12th at noon to Sunday at 1:00pm. It’s a great time to learn from experts and
to meet others who share your disease. The
conference will be held in the Loews Hotel.
There will be breakout sessions with Q&A. The VF will also be videoing some of the
speakers and talking with patients and family members of patients. Scholarships are available. You can find information on the website (http://www.vasculitisfoundation.org/philadelphia-july-12-14-2013/) or you can contact Joyce at 1.816.436.8211 or
1.800.277.9474.
The meeting was held at the Irish Center of Kansas City in Union
Station and Kelly Dougherty gave a brief description of the Center and the
types of things and events that were done and held at the Center.
Jerry talked about the VF Facebook group page on Facebook (https://www.facebook.com/groups/vasculitisfoundation/)
and the pros and cons of the site were explained. The pros - it is a great place to connect
with folks who share your disease and bounce ideas and questions off of each
other. The con being that while it is a
closed group where you have to be accepted to join, there is a possibility of
personal information being shared with others outside of the group. It’s important to be careful the information
that you release about yourself and your family on Facebook. The page is in need of more moderators and,
if interested, contact Joyce Kullman (see above for #). Someone suggested that our next meeting
include a segment on Facebook security settings.
Jerry also shared the VF website (http://www.vasculitisfoundation.org/). The various tabs and other valuable
information about the websites such as the links and dropdown menus were shared
and explained. One such tab was Cindy
Abbott’s story and her participation in the Iditraod race in Alaska.
Jerry also showed a Youtube video from the VF Youtube channel on Corey
Vandiver. To reach the VF Youtube
channel go to http://www.vasculitisfoundation.org/awareness/youtube-awareness/. The VF website page is a valuable instrument
to help with your care.
Another video from the Health & Home Report on public awareness of
vasculitis was shown along with a tutorial video form the Cleveland
Clinic.
Meeting information for the Kansas City VF chapter can be found at
vfkansas.blogspot.com.
At this point in the meeting, members gave updates on their personal
health. One member mentioned he may
be taking Rituxan. Insurance coverage
was discussed and someone mentioned reaching out to Genentech (http://www.gene.com/).
The meeting was adjorned.