Al.Silverberg@f8.n135.z1.fidonet.org (Al Silverberg) (11/21/90)
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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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!135!8!Al.Silverberg
Internet: Al.Silverberg@f8.n135.z1.fidonet.orgButch.Walker@p0.f3.n157.z1.fidonet.org (Butch Walker) (11/21/90)
Index Number: 11952 [This is from the Rare Disease Conference] >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 The first problem is getting the word out that resources such as this conference exist. There are many out there that could benefit from this conference or any of the other electronic support groups that do have PCs, they just don't know these conferences are around. The second problem is getting more BBS systems to carry the conferences. We don't even have one in each state, let alone one in each metropolitan area. The third problem then is getting PCs into the hands of folks that could use them. I think once we get problems one and two solved, problem three will be much easier to deal with. We have set up a non profit to tackle all three problems plus several more such as training impaired individuals to use those PCs, not just to tie into BBSes, but to make a meaningful living; and to coordinate efforts of similar interest groups. It takes time, but we are working on it. * Via ProEdit 3.2R -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!157!3.0!Butch.Walker Internet: Butch.Walker@p0.f3.n157.z1.fidonet.org