The following is a listing of National resources that may have information or services of interest to our families.
Wide Smiles:
Offers a quarterly magazine, WIDE SMILES, for lay audience, as
well as website and online discussion list, Cleft-Talk. WIDE
SMILES, Written by parents, for parents of children born with
cleft. This magazine is packed with useful, practical,
inspirational articles that speak to a lay audience of
intelligent parents. We discuss topics that touch our children at
every developmental level. While WIDE SMILES is written and
edited by parents, we also have a consulting staff of more than a
dozen professionals whose expertise ensures reliability. WIDE
SMILES Wide Smiles Inc. PO Box 5153 Stockton, CA 92105-0153 ($20
per yr; outside US, $24 US funds) Website URL:
HTTP://www.widesmiles.org
Cleft-Talk
offers a forum in which parents offer help to parents
and they can all discuss topics that only another parent of a
cleft-affected child can understand. Daily discussions on
anything and everything related to life with a cleft. Subscribe
and you'll receive messages via email every day. You choose
whether to respond or not... but still gain insight and share
others' experiences. Cleft-Talk Subscription instructions: send
email to: listproc@mother.com subject: no subject body of
message: subscribe cleft-talk your name (no cost)
Cleft Palate Foundation
Provides information concerning location of craniofacial teams,
support groups, other resources, as well as various literature.
1-800-24-CLEFT
Craniofacial Foundation of America
FACES
Provides free newsletter and produces other
educaional materials and networks for families. Offers financial
support for nonmedical expenses related to treatment.
1-800-332-2373
AboutFace US and International
offices,
provides information, literature, networking for all craniofacial
conditions. US office: 1-800-225-FACE Box 93 Limekiln PA 19535
International Office: 1-800-665-FACE 99 Crowns Lane Toronto
Canada M5R 3P4
National Parent-to-Parent Support and
Information System
Provides database for parent-to-parent networking. 1-800-899-0375
Box 907 Blue Ridge GA, 30513
Family Voices
Efforts directed at providing a family voice to local, state and
national policy planning. 505-867-2368 Box 769 Algodones NM,
87001
Forward Face
Provides information and financial support to
families dealing with craniofacial conditions. Publishes a
newsletter. Some videos available. 1-800-393-FACE 317 E 34th
Street, Suite 901 New York NY, 10016
Children's Craniofacial Association
Provides information, networking and financial assistance to
their familes. Also offers Cher's Family Retreat Annually
1-800-535-3643 9441 LBJ Freeway, Ste 115-LB46 Dallas TX 75243
Ability OnLine
Links children and teens with disabilities through the internet
HTTP://www.ablelink.org 416-650-6207 919 Alness St North York,
Ontario, Canada M3J 2J1
National Organization for Rare
Disorders (NORD)
Links organizations and individuals. Provides information on a
large number of rare disorders. HTTP://www.NORD-RDB.com/~orphan
203-746-6518 Box 8923 Nwe Fairfield CT, 06812
Let's Face It
Provides resource guide for people with facial differences
360-676-7325 Box 29972 Bellingham WA, 98228-1972
All About Me
(newsletter) FNMS - Foundation for Nager and Miller Syndromes 333
Country Lane Glenview, IL 60025 Margaret Ieronimo at
847-724-6449. (or toll free at 1-800-507-FNMS) FNMS recommended
the following books on self-esteem for teens The books are:
Breaking the Barriers to Higher Self-Esteem Barrier #1:
Inferiority Feelings Barrier #2: Perfectionism Barrier #3:
Pleasing Others All the Time by Jerry Hiller, PsyD, Marilyn
Rochon, MA
If you know of other resources that are of interest to families dealing with cleft, please let us know so we can add them to this list. Thank you.. Contact widesmiles@aol.com