In the spring of 1991, a group of four interested Sjogren’s Syndrome
patients met to discuss the possibility of forming a support group in
the Kansas City area.
Barbara Henry, a Sjogren’s Syndrome patient, who was then the President
of the National Sjogren’s Syndrome Foundation attended the meeting
to encourage and help in the formation of our group.
As of 2012 Dr. Mark Box, Rheumatologist is our professional advisor to
the educational/support group. As of October, 2016 the group has a membership
mailing of over 200 individuals who have been diagnosed with Sjogren’s
Syndrome in the Kansas City vicinity and surrounding towns in Kansas and Missouri.
With the mission of helping patients secure information better to cope
with the challenges of a chronic disease, the meetings are informative
with a health professional speaking to the group followed by a question/answer
format. Those attending the meeting are encouraged to visit with one another
for sharing ideas and support. The meetings are approximately 90 min.
to 2 hours. There are no formal dues but we recommend joining The Sjogren's
www.Sjogrens.org. The Sjogren's Foundation mails notices for our meetings by mail and
e-mail. If you are not a member of the Foundation we will send out notices
through Facebook and e-mail. Please make sure you are on the list with
Janine if you are not a member of the SSF.
We have 6 meetings per year.
4 meetings per year include professionals and experts in their field as
presenters for Sjogren's needs and information. 2 meetings per year
are members meetings where we bring our questions and personal information to share.
If you are on the mailing/contact list you will receive a flier about 10
days prior the scheduled meeting.
The meeting contents are proposed for rheumatology, pulmonology, and gastroenterology,
holistic movement strategies such as yoga/T’aiChi, meditation, pain
and stress management as to the findings in the treatment of Sjogren’s
Syndrome. Suggestions for programs are welcomed. (Meetings in previous
years were dedicated to prothodonistry, otolaryngology-ENT, ophthalmology-corneal
specialist, neurology, dermatology, gastroenterology and rheumatology.)
LOCATION: Saint Joseph Health Center in the Community Center for Health and Education-Building D in the Auditorium, I-435 and State Line Road, Kansas City, MO with a designated
1-435, exit on to State Line Road (south). Turn onto Carondolet Drive(east)
to the STOP Sign. Turn Left and go past the Emergency Entrance and down
and slightly to the left. Turn right into a parking lot dedicated to the
Community Center for Health and Education Building D. Once inside, follow
poster directions to the meeting location in one of four meeting rooms
all located close by.
For more information contact Janine Bensman 913-485-3942 or
firstname.lastname@example.org. Janine is a contact person for the Sjogren’s Syndrome Foundation
and volunteer chairperson for the local group.
Linda Stephenson is the co-leader of the support group. Her contact info: