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From: Al.Silverberg@f8.n135.z1.fidonet.org (Al Silverberg)
Newsgroups: misc.handicap
Subject: use of this area
Message-ID: <15859@bunker.UUCP>
Date: 20 Nov 90 18:36:16 GMT
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Index Number: 11951

[This is from the Rare Disease Conference]

The name of this area quickly caught my eye and I was very interested to see 
what was here. Imagine my dissapointment when I only saw 16 messages posted 
with no real interaction in any of them. The reason for my interest is that I 
have a wonderful four year old boy with a very rare condition - a metabolic 
disorder called Propionic Acidemia.  For a long time we used to receive a 
newsletter written by a wonderful woman in Kansas City that gave information 
about other children with this condition their families and how they were 
doing.
Unfortunately after years of hard work on this newsletter she decided to slow 
down and no  one has ever taken her place. I really miss this newsletter and 
the sharing of information about other families with kids with the same 
problems. I've been searching ever since for a replacement and was delighted 
to spot this message area. I would really like to see more people using it. 
However I do tend to wonder how many families with kids with rare disorders 
own PC's and use them for access to BBS's. If somehow we could get PC's out to 
families of individuals with these problems and make them aware of BBS's with 
message areas along these lines, I think a lot of people would get a lot of 
emotional and other needed support. Anyone with any idea's I'm real 
interested. Please use this area

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