Vasculitis Kansas City Chapter Meeting - December 2013
17 people were in attendance.
Brad Yeats, Stephen
Jefvert, Bill Spink, Glenn & Arlene Kullman, Joyce Kullman, Jerry and Judy Niebaum, Denny & Ruth Hale, Juday & Chad Graton, Julie Tanner, Mary
Tanner and Kelly Dougherty
Three studies
are being funded ($50K donors and 2 $25k donors) all the rest is VF funding.
All
studies will be announced soon.
We
have a large mix of vasculitis diseases in the
group. Valuable information about each
can be obtained from the Vasculitis Foundation website at https://www.vasculitisfoundation.org/.
New and ongoing treatment information
can also be obtained from the website.
It is
encouraged that everyone become a member VCRC.
Connect at http://rarediseasesnetwork.epi.usf.edu/vcrc/.
Jerry
Niebaurm presented the PowerPoint lecture that doctor Carol Langford gave on Vasculitis
at the KC Vasculitis conference in May of 2013 with Dr
Abdou.
Denny
passed out the Be Well mag from KU.
Our
quarterly meetings occur October, December, March and May on the 2nd
sat of the month.
There
was discussion on whether this group prefers to be support group or a chapter. It
was felt that a chapter would be more toward what this group is with educational
components and support as the main elements for the group.
More
discussion was had on the group Vasculitis Foundation Facebook page as well as
other Facebook group pages that are more disease type specific. Discussed internet security and the
difference between an open group where anyone and everyone can see your
information vs a closed group where you must be approved to become a member and
no one but the group can see your info.
However, others can share you information outside of the group.
Asked
for suggestions for online webinars.
Meeting
was adjourned.
Next
meeting:
March 8th meeting.
Minutes by Kelly Dougherty