<<Disclaimer: Verify this information before applying it to your situation.>>

There are many long responses to my suggestion that this LIST serve as a
Super (Supra) Celiac Organization.  I'll run most of them by you, but first
a couple of things that are evidently not clear in my original post.

I have NO intention of changing this list from the way it is now running.
We would still answer one another's questions, tell what we have learned,
share news about restaurants and packaged foods, etc. etc.  The MD's
responses to questions would be in addition to responses from the LIST
members.  For instance, there were some questions today about how long it
takes the villi to heal.  It would be nice to have an authoritative answer
to a question like that.  That would not prevent any of us from telling our
individual experiences about how long it took for villi to heal.

I do not envision that any existing celiac organization will disband nor
change in any way.National or regional, or just city celiac groups will
continue doing what they have always done.  All those groups will be
helpful to the LIST, just as they are today, sharing information, lists of
safe foods, etc.  It is just that their lists could then be colated and
available to many more people, thus helping many more celiacs in South
Africa or Alaska or Poland, etc.  We have list members in all those places
who probably have no local groups to join and no way of talking directly
with other celiacs except this wonderful LIST.

Here then, the beginning of the summary:

>Those of us on the list who are also affliated with local and national
>support groups need to spread the word about the list. Many, if not
>most, public libraries have internet access.  This list is available in
>archive format at http://maelstrom.stjohns.edu/archives/celiac.html.  I
>believe one could access the list to read or post from this website.
>I've not tried to do it from the website, but I am in the process of
>encouraging some of our local support group members to try it out, even
>if just for the search engine capabilities alone.  The way technology is
>going, I truly believe it won't be long before accessing e-mail and
>internet will be as common as the telephone and television!  Soon, WEB
>TV will be available through most cable companies and anyone who has
>cable TV could also have web and e-mail access.
>
>I hope this is one positive answer to the question of how to reach other
>celiacs!
>
>I'll be interested to see the comments regarding your thoughts about the
>super organization for celiacs!  However, the more people in a group,
>the more differing opinions you'll have, and even all the medical
>advisors will probably not agree on what the "standards" should be.  We
>will still have to make informed choices for ourselves.
>
>Paula Raleigh
>Naples, Maine

>You have some great ideas. I too have been trying to mobilize the list to
>action by encouraging them to write letters to targeted media outlets. My
>recent posts are referred to as Solution Awareness.(formerly National
>Exposure Initiative)  Out of the hundreds of Us members, only about 30
>people have contacted me to say they are participating.
>
>You mentioned the physicians list. I wonder how active it is? I have been
>part of Cel Grps for a few years and have only received one post. I have
>posted to it but have never received a response. Shows what a pitiful lack
>of cooperation there is between Major groups.
>
>Don't let me discourage you . Id love to help in any of your endeavors.
>
>Dan Davis

>Nice idea.  Those of us who have been striving and DEVOTING our lives to
>celiac disease, wish you luck.  It is easy to sit back and criticize when
>you are not doing the work.  Time to put your time where your mouth is,
>Gayle,

   My response to that is that I spend a couple of hours each day answering
   List messages, trying to be helpful, especially to those newly diagnosed.

>It's a great idea.
>
>I think that the list can also be used to do good science.  Abigail's
>weekly questionaires are a good starting point.
>
>Mike Miles
>Victoria, BC

>       I have often wondered why there is no doctor donating his/her
>time to this list? Could it be that there is no one person who feels
>qualified in the field of celiac disease
>       I think this is a wonderful idea and one that is employed on my
>rare cancer group which is for leiomyosarcoma. There are only 194
>members and we now have
>4 doctors onboard who we address for medical questions, etc. It is
>working out fine. The listowners make the decision of sending it on to
>the doctors and don't take up unnnecessary time by screening the
>questions first.
>        I think your idea is a viable one because it works!
>        Rosalie  NJ

>Your idea sound great and feasible.
>I feel that there is so much information scttered about, and some of it
>is contradictory which makes it confusing. People need to distinguish
>between GF and the fact thet they react to something which may not be GF
>when giving recommendations and advice. Professionals should be able to
>help us there. As a recently diagnosed celiac I am learning so much from
>our list, more than my gastroenterologist was able to tell me.
>
>I hope others will agree with you (I can't see why not).
Eileen Mauskap

> Makes sense.  Surely there are 31 knowledgeable doctors out there
>willing to help us with this.  (Unfortunately, we don't have one here in my
>area, but we are talking about the WHOLE WORLD!)  Sounds like what is needed
>is someone to organize it and head it up.  The listserver will probably
>contact you after your letter, so maybe they will have some good suggestions
>to get it going.  Diane Humphrey

>No comment about but your suggestion other than to say that I have met Mike
>Jones who is largely responsible for setting up this LIST while in Florida. He
>is a "celiac saint" as far as I am concerned.  I asked him how much time he
>spent managing the list and he modestly said, "Probably three hours a day
>DURING THE WEEK" - no comment on how much time on the weekend.
>
>Jim Lyle's is another person responsible for the list - Jim Lyle's and his
>wife spend countless hours MANAGING THE LIST.
>
>There are many others who spend countless hours, days MANAGING THE LIST.
>Perhaps listmates should be encouraged from time to time to thank these people
>- I am sure it would be appreciated.
>
>I feel these people are these are the people to present with your ideas.  I
>feel they could give you answers as to whether or not your ideas are feasible.
>
>Good luck
>
>Jane Trevett - New haven, CT

>I really enjoy the LIST just the way it is- lay people providing support and
>opinions to each other.
>
>There are several official Celiac organizations around the world because
>people do not all agree on several key issues, such as "questionable grains."
>I like the fact that the LIST does not have to restrict itself by having
>"official positions" on political issues such as safe food lists and
>legislation.
>
>Also, considering that people on the LIST have been given different
>information by various doctors, I wouldn't want to give up hearing about other
>people's experiences in favor of having an MD give an "official" answer to
>medical questions that arise.
>
>I think there is a need for an online support network, and I think this LIST
>has done a great job of filling that need!
>
>Good health,
>Stacie

>        FWIW, the list is sponsored and hosted by St Johns University, as
>part of a project of Dr Bob Zenhausern of their psychology department.  Tne
>oroginal premise was to facilitate email contact around various rare
>conditions, primarily with an eye toward "support" (as in
>emotional/psychological support, really) of each other.  If you look at the
>other St Johns hosted lists, you'll see a laundry list of rather rare
>medical conditions.  Dr Z is about to retire.  I don't know how, if at all,
>that will impact the various lists.  Probably that is something someone
>should attempt to find out.
>
>        There are generally fees involved in having a list hosted, and also
>for storage for archives (of which the celiac list's seems large).  I once
>heard a figure of around $60/month for hosting - I think that was for
>non-profits, so the celiac list would qualify - but that was in the context
>of a list of about 200 members.  I've no idea whether the cost would
>increase with the size of the list.  One other list I'm on asks $10/year
>donation, and that is how they pay the hosting fee.  It's a really small
>list, though.
>
>        As for who is and is not on-line, I have some interesting statistics
>to share with you.  Our local public school district (close-in midwestern
>suburb) just did a survey of parents.  90% have a computer in the home, 70%
>(of the total response, not of the 90%) have internet access.  Those
>percentages _increase_ as the age of the oldest child increases.  These were
>_public_ school families.  Presumably the (generally wealthier and more
>school-involved) private school families have a higher %age of computer
>ownership and 'net access.  My point is that computers and internet are
>becoming so very common, basing something such as a celiac organization on
>them is IMO now a reasonable thing to propose. One short year ago, I
>wouldn't have said that.
>
>        It is still entirely possible (not as _fun_, but possible!) to
>access the 'net with a 486/25 and a 14.4 (or slower, depending on one's ISP)
>modem.  In some locations (metro Detroit included) there are still FreeNets
>that offer _free_ text-only, mostly email-based net access.  With the size
>of this group, it seems to me it would be entirely possible to pass the word
>that (1) donations of old, slow computers are welcome, so that they can be
>given to celiacs in need and (2) some central information source should be
>made available as to what are the free or very low cost ways to connect to
>the 'net.  $14.95/month is now common, and there are a fair number of $8.95
>or $9.95 services available, though some of them require payment of 6 months
>or a year in advance.
>
>        Of course I wouldn't want to see the local groups disappear, 'cause
>it's not possible to do a pot-luck GF buffet over the 'net!  However, I do
>agree that some sort of restructuring (or supplementary structuring) of the
>list to make it a more effective advocacy tool is a great idea.
>
>- Lois Seyler

>Great - I didn't know you had already approached the Listowners.  It may be an
>idea that takes time to implement.
>
>You are right - we are all working hard to create celiac awareness and put
>many hours and days in doing it.
>
>Good luck with your approach.  I hope it works.
>
>Jane Trevett

That's it for now - there may be more.  Gayle Kennedy