Al.Silverberg@f8.n135.z1.fidonet.org (Al Silverberg) (11/21/90)
Index Number: 11954
[This is from the Rare Disease Conference]
Point 1 : Getting the word out. The way I found out what was available was a
bulletin board on the ward at Johns Hopkins where my son was. I believe
most hospitals have some such place where parents or others can get such
information and would be pleased to either post or carry the information in a
format that could be handed out to others. Information as to your profit free
organization and list of BBS's would be a good starting point.
Point 2: Once the word is out, people who do have P.C.s need to use them to
call local BBS's and request them to carry the information they find out
about in Point 1. A list of BBS's by State and a request to call them and
make sure they carry the message areas might be a good thing to include in 1
above.
Third: I would like more information about your non-profit organization. I
still have a mailing list of families from when I was receiving the now
defunct Organic Acidemia Association Newsletter and could pass on the
information as to BBS's etc.
Thanks, Al
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