<<Disclaimer: Verify this information before applying it to your situation.>>
In response to my request:
There seem to be a number of national and regional groups that focus on
Celiac Disease.
I was wondering about the factors that local groups may have considered when
deciding to affiliate (or not affiliate) with a national group.
The following responses arrived, mostly in the order that arrived:
1. I started a local support group here in the Lehigh
Valley area of PA about 1 1/2 years ago. We have
grown very rapidly and are considering joining a
national group.
2. I started a suspport group 18 months ago after being diagnosed. We have
done well on our own. I have had many speakers who have come. We have
averaged 12 to 15 people a month, and sometimes as low as 9, and as high as
around 20. The subject of affiliating with GIG came up and as a group we
decided not to. We didn't want the hassle of dues, electing officers and
all the other things that went with it. We do a good job on our own, and
watching this list helps with ideas also.
Not sure if this is the feedback you wanted, but that is how we did it, and
we are pretty successful. (the writer was from Ohio)
3. I would be interested in what you learn, Michael. I've started a group
here in Gettysburg and have not yet affiliated with any national group.
There are pros and cons, aren't there?
4. When we started our local support group app. 7 years ago there was
only one national support group that had local support groups,
CSA/USA, with over 90 local chapters. In the last year or two, one
West coast "national" support group has been quite vocal by attacking
CSA/USA in an effort to divide the celiac community and attract
support for their efforts. As a result some local chapters have now
become "independent" and some have joined this other "national"
support group. It is pretty sad.
5. For sure, the Celiac Disease Foundation in Studio City, Calif. is the
most up to date, has the most extensive and informative newsletter and stays
on top of the most recent findings. I have found them to be an invaluable
resource. They have a website and you can check it out.
6. Do you feel negative or positive about life
Most groups tell you what you can't do
the Celiac Disease Foundation (www.celiac.org)
tells you what you can do.
They have done most of the work guiding
the medical profession to become aware of
the problem and changing the NIH prevalency
from 1 in 14,000 to 1 in 200.
I belong to alot of the organizations
if you had to pick one, I would say CDF. (the writer if from CA)
7. As far as the support group goes, we have a CSA chapter here, but they
don't seem to interested in reaching out to the community, they keep
inviting me to meetings but haven't answered any of my emails about
physician education, or public awareness, so I don't get it. I will go next
meeting and see if I can scare up any interest, I guess. If not I will just
keep plugging away on my own
8. Most have seen this reply on list. I include it here for completeness.
---
In response to Michael's question why a group should join with
a national celiac support group, I offer the following.
BENEFITS OF GROUP MEMBERSHIP IN CSA/USA, INC.
Access to:
? "Chapter "Guidelines" (suggestions for organizing and running a
support group).
? Listing of your group with CSA/USA to get direct referrals from CSA
and other
support groups.
? Access to CSA members in your zip code area; CSA will send your letter
to the
area's celiacs telling them about your chapter.
? More credibility as an official CSA Chapter or Resource Unit within
your city's medical
community.
? Willingness of other CSA leaders to give direct assistance and access
to their
special lists of contacts in your area.
? Encouragement by CSA leaders for leaders of chapters and resource
units, as
well as members, to attend the national annual conference, attending
any training sessions and region sessions to acquire more information and
helpful hits in coping with the gluten-free lifestyle.
? Encouragement by CSA for officers and members to write interesting
articles
for LIFELINE to share. The Executive Director is the editor of this
publication.
? Rebate to chapters for CSA members within their zip code area.
What Does It Take To Have a Great Support Group?; - An interested,
active and
informed membership. All leaders have individual talents to bring to the
support group. There is no one "right way" to lead a support group.
Strengthen good leadership qualities by developing and exhibiting these
characteristics.
? Loyalty (Commitment to the work of CSA/USA and your chapter)
? Understanding (Articulate the vision and purposes of CSA. Apply and teach
the clinical celiac diet.
? Listening (Listen to members' stories. Tend to the concerns and
worries of each other.)
? Predictability (Stability in word and action)
? Creativity (Strive to develop novel solutions to problems; Be eager to
meet
people's needs in unique ways. Foster friendships and cohesiveness
within your membership.)
? Efficiency (Get things done fast and with little cost or aggravation.)
? Insightful (Be a team player with your fellow officers. Ask probing
questions and foster new perspectives.)
? Honesty (Be sure you deserve trust of your membership to represent the
organization.)
? Persistence (Attack problems with gusto and a positive attitude.)
? Practicality (Solution oriented to make things work.)
? Communicative (Shares progress, statistics and news with other
leaders, members and beyond.)
? Helpfulness (Lends a helping hand when the members & CSA need it.)
? Complementary (Complement the members and fellow officers whenever
possible; pick up the slack.)
? Cheerfulness (Always have a quick warm smile of welcome.)
Janet Y. Rinehat, Former President, CSA/USA, Inc.
9. I live in Toledo, Ohio. I keep running into relatives and
friends of Celiacs, but never the individuals themselves.
I keep trying to have these contacts have the Celiac
person contact me, but no one ever does. There
should be about 1600 Celiacs in this city, but I sure can't find them. But
then, if they have as much trouble getting diagnosed as I did (GI and
Radiologist insisted diverticulitis--for months on end), maybe they are
being treated for the wrong things. I'm on a personal campaign to educate
my own doctors, I don't refer them to articles, I bring them printed
articles I take off the internet.
<<details of personal and family illness edited out>>
I'm running a support group with one member, here.
Most of the doctors I've said "Celiac" to still think it's a
tropical disease (Celiac Sprue actually started out as that). Am I
frustrated? Yes. Have I given up? Hardly.
10. I had an extensive and friendly call from Cynthia Kupper of GIG. They
have partner groups rather chapters. She shared a considerable amount of
info and I have copies of GIG's materials. Drop her a line/email if you have
any questions.
---
Michael Thorn
Suffolk County/Long Island/NY
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