I am part of a large support group on Prodigy for people with Crohn's
disease and ulcerative colitis.  Two of our most active members began
a nonprofit newsletter about six months ago that is extremely informa-
tive and I thought I would post about it on Usenet for anyone who
might be interested.  The following is an informational blurb about
the newletter from its cover:

        I.B.Details Newsletter is published so that people who
        have Crohn's disease and ulcerative colitis can help each
        other live productive lives and stay informed about their
        disease.  We believe strongly that people with IBD benefit
        by staying connected with others who are struggling with
        the same issues and concerns.  Letters published represent
        the opinions of the contributors and not necessarily the
        opinions of any individual connected with IBDetails.  
        Regular issues are published quarterly and subscriptions
        can be obtained by sending $25/year to:  Carol Svelich,
        12650 Futura Street, San Diego, CA 92130.

If you write to Carol, she *might* offer to send you a free sample
issue first, it would depend on how much of a response she gets to
this (as this is a nonprofit venture, and the newsletter is of a
highly professional quality, money is tight).  

Also contact Carol if you have a product to sell people with
digestive diseases, as ad space is being sold.  

Finally, anyone who would like to join an online support group,
we are currently split up between Prodigy and NVN.  Prodigy's
rates are increasing, so people are gradually moving to NVN.

I am (hopefully temporarily) losing my Usenet access tomorrow,
so let me apologize in advance if anyone has any questions and
I am unable to get back to them.

                                        Susan Blanc

It seems to me that $25/year for a publication that comes out quarterly
is hardly non-profit.  I recommend instead that readers with IBD
subscribe to the IBDList which is free via email.

Here is the info:

The IBDList Digest appears as often as required.  Articles, items of
information or other mail to be published should be sent to:

or udel!mvac23!ibdlist

  udel!mvac23!ibdlist-request.

Sorry you feel that way Seth.  Carol and Ellen (the "publishers")
are really nice people who are trying to reach out to others with
IBD and let them know they're not alone.  I don't know much about
publishing, but this thing is typeset and on really nice paper
and so far has no ads, so that's probably why it costs $25.  So far
it's been a money-losing proposition, probably due to economies of
scale.   Anyway, I hope I didn't imply that the newsletter is
in any way meant to be competition for the IBDlist.  I personally
can't wait to get my new e-mail address next semester and subscribe
and share all the info I get with my Prodigy pals.  I'll probably
even write an article about it for the newsletter!  I just thought
that other people with this disease, like me, have a very strong
need for both support and information, and the more sources of
both the better.  I also know from my short period of time reading
this topic that there are people using Usenet with friends and
relatives who have IBD who don't have access to Usenet and might
be interested in a newsletter with lots of personal stories about
what it's like to be scoped, to be on prednizone, etc. and with
pen-pal addresses.  The newsletter even has a gastroenterologist
contributing lengthy articles such as "Frustrations for Physician
and Patient in the Diagnosis of IBD", which lets people who have
had a tough time in terms of credibility with doctors know that
they're not alone.

        Like I said in the original post, unless the response
here is so overwhelming as to make it economically unfeasible
(which I doubt will be the case), I'm sure Carol will continue
the current practice of sending out a free sample issue to
anyone who requests one.  

For those who know about the IBDlist Digest, I started that mailing
list independently of the Prodigy folks (and about a year or two
earlier, I suppose).  Hopefully, when The Almighty Prodigy feels
appropriate to turn on prodigy.com and let messages through, we
will hopefully be able to hook up the two groups of people through
some sort of gatewaying of messages.

Stay tuned.
                         - tom
--


OSI          : C=US/A=MCI/S=LAPP/D=ID=4398613
uucp         : {ucbvax,mcvax,uunet}!udel!mvac23!thomas
Location     : Newark, DE, USA

Sure.  Here is the info.  Regards,  Seth

===========

The IBDList Digest appears as often as required.  Articles, items of
information or other mail to be published should be sent to:

or udel!mvac23!ibdlist

  udel!mvac23!ibdlist-request.

I have been communicating with someone on Prodigy who is one of the users

advise me that it is an additional charge feature and they are charged for
both messages sent and received.  (All of the BETA slots are filled now.)
I expect that when Prodigy is able to obtain the funds for the necessary
additional hardware (if they can justify thet it will produce a profit for
them) it will be available to all users who are willing to pay for it!

But of course, according to the same source, if prodigy is not taking in
enough to keep the lights on after Jan 1, 1994 this will all be moot since
then Prodigy will be gone, since their allowance from Sears/IBM stops on
December 31, 1993.

--
   The opinions expressed are not necessarily those of the University of
     North Carolina at Chapel Hill, the Campus Office for Information
        Technology, or the Experimental Bulletin Board Service.
           internet:  laUNChpad.unc.edu or 152.2.22.80

Well, I don't mean to get into an argument or flame-fest, but I can
tell you this ... I *do* know about publishing, and I can assure you
that if this is has been a money-losing proposition, it is that way on
paper only.  In other words, they can show a loss by including the cost
of the equipment they use as related costs.  And even with
that, take a look at the numbers: that's $6.25 per issue.  What
publication that you ever heard of costs that much?  Let's make a
guestimate that they have 250 subscribers.  That's $1,562.50 they take
in per issue.  Or, $6,250.00 per year!  This is enough to pay for many
computers, printers, etc.  It's WAY out of line for the kind of
operation you are alluding to.

But, if people find it an acceptable cost and get something they value,
then they can pay it.  What I don't like is that this is a lot of money
and it could be going to other organizations where it would do more
good, such as the Crohn's and Colitis Foundation of America, which
publishes a newsletter, sponsors research, etc. and/or the United
Ostomy Association, which publishes a magazine, and provides support
for IBD patients.  These organizations do lots of good work BESIDES
just promoting communication between patients.  The UOA is in the
process of setting up an electronic forum for support and dissemination
of information as well.

So, I believe that the money could be better spent.  But as I said,
this is something each individual has to decide, whether they are
spending their money effectively.  And let me assure you that even
though those people may come across as "nice" people (most con artists
are real friendly) at those prices their not-for-profit organization is
able to accumulate lots of stuff.  Desktop publishing is so simple
these days, all they need is a computer, one piece of software and a
printer, which could be done for between $2k-$3k.

But, I guess anyone who uses Prodigy is used to throwing their money away
anyway.

-Seth