slw@abvax.uucp (Shoshana L. Wodzisz) (01/10/91)
Index Number: 12777
[Note from Bill McGarry: See the next article]
I'd like to get in touch with anyone having any information on
Apert Syndrome or anyone who knows anyone afflicted with it (regardless
of age). My niece was born with Apert Syndrome a year ago, and
since that time my sister, myself, and our family have been trying
to learn as much about it as possible. If you have any information,
please contact me (or post).
I'm not sure how reliable the email address below is - posting is
fine - I'm eagerly awaiting any replies, however I'm doubtful :-(.
(I've previously posted this request to sci.med)
My work address is:
Shoshana L. Wodzisz
Allen-Bradley Co.
747 Alpha Drive
Highland Hts., Ohio 44143
Work Phone: 216-646-5248
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Shoshana L. Wodzisz @ Allen-Bradley Company, In lovely Cleveland Ohio
... !{cwjcc, uunet}!abvax!slw
-------------------------------------------------------------------------------wtm@bunker.uucp (Bill McGarry) (01/10/91)
Index Number: 12778 Shoshana Wodzisz writes: >I'd like to get in touch with anyone having any information on >Apert Syndrome or anyone who knows anyone afflicted with it (regardless >of age). I'm sending you more complete information but here is a list of some resources that should be helpful. National Organization for Rare Disorders (NORD) P.O. Box 8923 New Fairfield, CT 06812 (203) 746-6518 (All of this information is from the NORD database) Apert Syndrome Support Group 8708 Kathy Court Saint Louis, MO 63126 (314) 965-3356 NIH/National Institute of Child Health and Human Development (NICHHD) 9000 Rockville Pike Bethesda, MD 20892 (301) 496-5133 For more information on genetics and genetic counseling referrals, please contact: March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 (914) 428-7100 National Center for Education in Maternal and Child Health (NCEMCH) 38th & R Streets Washington, DC 20057 (202) 625-8400