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An acquaintance of mine has a child with Angelman Syndrome.  She suggests
your patron contact the Angelman Syndrome Foundation in Gainsville, FL.
It's the national research center for Angelman's and has a conference
(that families attend) ever other year.  They also have a newsletter she
could get.  Address:
Angelman Syndrome Foundation
c/o Jill Hendrickson
5950-77 S.W. 20 Avenue
Gainesville, FL  32607-3644
904/332-3303
 
Hope this helps.  Angelman's Syndrome is a heart breaker.
 
Sue Skoglund
[log in to unmask]
 
On Wed, 11 Oct 1995, Margaret Henderson at CSHL Library wrote:
 
> I don't normally get questions about specific diseases from community
> members in my library - usually we just deal with scientists - but a woman
> asked us to find something on Angelman syndrome (her 5 year old child has
> it) because it was genetic and we deal with genetics here.
>
> I sent her the few pages in 'Mendellian Inheritance in Man' and I did a
> quick Medline search for her as well.  Most of the articles had to do with
> the genetics of the disease not the treatment or how to deal with the problems.
>
> If anyone knows of a specialist this poor woman can call to get support or
> help I would appreciate whatever you can send me - or if there is a support
> group.  As I said, I seldom deal with queries such as this so I need your help.
>
> Sincerely,
>
> Margaret Henderson
> Head of Library Services
> Cold Spring Harbor Laboratory
> 1 Bungtown Road
> Cold Spring Harbor, NY  11724
> [log in to unmask]
> tel. (516)367-8493
> fax. (516)367-6843
>