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Dear Fellow Subscribers:
I am honored to have been the person who founded the CELIAC listserv,
although I cannot really take much credit since someone else surely
would have done it if I had not. As November 3rd is the first anniversary
of our discussion group, I thought you might enjoy a review of its
history and progress.
Inception
In late June 1994 my then-7 year old son's biopsy came back as positive.
My wife and I experienced so many different strong emotions at one time
--- anger at the three pediatric gastroenterologists who had over the
prior 6 years failed to test for (or even suggest) Celiac Disease;
sorrow at the pain and harm caused to my son during his years of
suffering; and joy & hope for the future now that we realized that this
major problem can be "cured" with a GF diet.
Although I had used email for many years as an investment banker, I had
only a little experience with the internet. I downloaded a "list of
lists" and discovered there was nothing about Celiac or gluten. A friend
told me that St. Johns had a number of health-related discussion groups,
and I wrote to Bob Zenhausern to ask if he would consider sponsoring a
group devoted to gluten intolerance. He agreed, as long as I could put
together the necessary volunteers to administer the list.
My next call was the luckiest of them all. I had read an issue of Mike
Jones' newsletter (Celiac ActionLine) and felt it to be well-researched
and very frank. I called Mike cold, introduced myself and told him about
the opportunity. I then asked if he would be willing to be in charge of
list administration. I had stumbled onto a goldmine ---- although Mike
had never accessed the internet, he was a Celiac, had years of experience
programming mainframe computers, and had edited a Celiac newsletter ---
the perfect combination of skills for this discussion group. Within a few
days, Mike was on-line and ready to go.
I also invited Lisa Lewis and Evan Hunt to join the listowner team.
Lisa is the mother of an autistic child with extreme gluten sensitivity,
and had written an excellent "white paper" on her experiences. Evan is
the husband of a Celiac, and had a small private email group on gluten
intolerance. Later, we would add Jim Lyles, who has superb computer
skills, and, as the head of a major Celiac support group, brought a wealth of
knowledge.
Recruiting
Our next step was to make the list more interesting and to improve its
potential for accuracy, by getting professionals in the Celiac field to
join the list. I called a number of clinicians and researchers with
whom I had previously spoken, and most agreed to join us. Notable
amongst these were Joe Murray and Don Kasarda, who wound up spending
many hours patiently answering our questions on-line.
The listowners then approached several national Celiac groups for
permission to announce the list in their newsletters and at their
conferences. Elaine Monarch at the Celiac Disease Foundation was the
first to agree, and I presented a short talk about the internet and our
concept to her annual meeting even before our list was "live".
Implementation
On November 3, 1994 we threw the switch and went live. In retrospect,
it is amazing that this took place only four months after my son's
diagnosis. Much of the credit for this goes to Mike Jones and St. Johns
for getting an incredible amount of administrative work done very
quickly.
We sent news of the CELIAC list to a special mailing list on the
internet dedicated to announcing new discussion groups. Within 15 days,
we had our first 150 subscribers. We were stunned at how quickly the
sign-ons were coming in! Since that time, the list has continued to
grow in net subscribers at the rate of about 2.5 per day. We hit 200
members on Dec. 13th, 300 members on Feb. 11th, 400 members on Mar.
27th, 500 members on May 23rd, 600 members on July 10th, 700 members
on Aug. 21st, and 800 on October 3rd. As of today there are 880 members.
Along the way, we were able to recruit (or were found by) many additional
Celiac professionals.
Expansion
The listowners' next task was to create a FAQ (frequently asked
questions) file. With the help of a superb team of Celiac volunteers,
the file was written, edited, reviewed by several Celiac physicians and
finally posted in early June. We are very proud of this document, which
is a clearly written, concise but surprisingly comprehensive resource.
Mike Jones could not rest on this success, however. With the help of
Jim Lyles and other volunteers, he created over two dozen specialized
reference files covering every imaginable need for the on-line Celiac.
(Send an INDEX CELIAC command to [log in to unmask]
to see them all; it is amazing.)
Jim and Mike then arranged for the free on-line distribution of their
own celiac newsletters, and with the help of Joe Warren, structured the
creation of an edited daily digest to serve busy professionals and /or
those with limited internet budgets.
By summertime, we had also started CEL-PRO, a discussion group limited
to professionals in the Celiac field and sponsored by Princeton
University. This brought in over 50 Celiac professionals, many of whom
did not have the time to page through the heavy traffic on the CELIAC list
-- yet through the connections between the two groups we all can benefit
from the knowledge they bring on the Celiac condition.
This fall, we began a separate CEL-KIDS list (also at St. Johns) so that
children with Celiac Disease can have pen-pals and their parents can
have a forum to discuss the unique issues of bringing up a gluten-
intolerant child. We have also created a second closed forum at
Princeton for leaders of Celiac support groups to communicate about
grants, newsletters, common goals, meeting ideas, etc.
Where We Are Today
The CELIAC list and its associated files and resources represent a
truly amazing resource for the international Celiac community. We have
22 nations currently represented, and offer several hundred pages of
information which are totally free of charge. Over 4120 individual
posts have been made to date (an average of 11 per day)! We often get
private email from subscribers telling us that their health and lives have
been materially improved by information from these resources.
Ultimately, all the credit for what has been accomplished goes to you,
the subscribers, who have collectively put in thousands of hours
reading, researching, composing, correcting and posting information onto
our list. These posts have been the raw materials for almost everything
we have assembled. Thank you all for your efforts!
Finally, we would like to express our most sincere appreciation to St.
Johns University and Princeton University for donating the
telecommunications and computer expenses associated with running these
lists. Due to St. Johns, Princeton, and our volunteers, not a single
person or organization is paid for the running of these lists, so we do
not have to charge our subscribers.
I hope the next 12 months will bring even more dynamic growth to our
operation. There is always more we can do. One dream I have is the
creation of a detailed central database of professionally generated
research on the GF status of specific foods, with 24 hour access via
the internet, and via operator for those without internet access.
Perhaps a benefactor will emerge one day who can fund such an operation!
Yours truly,
Bill Elkus
Los Angeles
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