Other Offline Resources
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Christine puts out an excellent quarterly newsletter, Apert News.
Look
for Apert News Online soon! Christine's newsletters evolved from
her communications with other Apert parents. She has a daughter, Michelle,
with Apert. Her newsletters are full of helpful tips which all Apert parents
should know. We highly recommend you contact Christine and get on her mailing
list. You can contact her via email at apertnet@ix.netcom.com.
She organizes family get-togethers, usually in California, and says right
now she has about 220 Apert families and physicians on her mailing list.
A
picture of the Clark family |
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Steve Moody has been a wonderful friend and is our counterpart in the
United Kingdom. Steve's the chairman of the Craniofacial Support Group.
Steve's daughter Erica has Crouzon Syndrome and the group deals with Apert,
Crouzon, Cloverleaf/Pfeiffer, Saethre-Chotzen, Craniosynostosis, and other
craniofacial anomalies. The newsletter is very informative and features
articles by physicians as well as families and other professionals. The
address for the group is :
Craniofacial Support Group
44 Helmsdale Road
Leamington Spa
United Kingdom CV32 7DW
Tel: +44 1926 334629
Or you may write to Steve Moody at 100130.1636@Compuserve.com
and visit their website
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Childrens Craniofacial Association
9441 LBJ Freeway
Suite 155 LB 46
Dallas TX 75243-4522
Phone: (800) 535-3643 or (214) 994-9902
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The Childrens Craniofacial Association has a bi-monthly or quarterly
news letter, have numerous information booklets (on a lot of craniofacial
subjects) and a nice booklet on Aperts. They put on the "Cher's family
retreat" once a year (Cher, as in Sonny and Cher. She is the honorary chairperson.) |
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About Apert
31 Bethune Street
New York City, NY 10014
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Phone: (212) 989-2790
Contact: Augusta Gruen |
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Apert Syndrome Pen Pals
PO Box 115
Providence, RI 02901
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Phone: (401) 421-9076
Contact: Christine Bucci |
If you are aware of any other offline resources, please tell us about
them!
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