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This one is about: National Resources
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******* NATIONAL RESOURCES OF INTEREST *******
******* TO FAMILIES OF CRANIOFACIALLY-AFFECTED CHILDREN *******
The following is a listing of National resources that may have information or services of interest to our families.
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 Inc.
PO Box 5153
Stockton, CA 92105-0153
($18 per yr; outside US, $22 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.
Click here to view information on subscribing to Cleft-Talk
Cleft Palate Foundation (along with American Cleft Palate-Craniofacial Association):
Provides information concerning location of craniofacial teams, support groups, other resources, as well as various literature.
Cleft Palate Foundation Website URL: http://www.cleftline.org
American Cleft Palate-Craniofacial Association Website URL: http://www.cleftpalate-craniofacial.org/
ACPCA / CPF National Office
104 South Estes Drive, Suite 204
Chapel Hill, North Carolina 27514
Phone: (919) 933-9044
Fax: (919) 933-9604
To get a list of their free publications, either call them or fill out their online form.
Craniofacial Foundation of America
Provides free newsletter and produces other educational materials and networks for families. Offers financial support for non-medical expenses related to treatment.
US and International offices, provides information, literature, networking for all craniofacial conditions.
Limekiln PA 19535
99 Crowns Lane
Toronto Canada M5R 3P4
National Parent-to-Parent Support and Information System
Provides database for parent-to-parent networking.
Blue Ridge GA, 30513
Efforts directed at providing a family voice to local, state and national
Algodones NM, 87001
Provides information and financial support to families dealing with
craniofacial conditions. Publishes a newsletter. Some videos available.
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
9441 LBJ Freeway, Ste 115-LB46
Dallas TX 75243
Links children and teens with disabilities through the internet http://www.ablelink.org
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.
Nwe Fairfield CT, 06812
Let's Face It
Provides resource guide for people with facial differences
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. email@example.com