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This section contains information and resources for the many aspects of facial disfigurement. There is also a special section specifically for siblings and fathers.
AboutFace
A nonprofit support network for facial difference. Their resources include newsletters, videos, and publications.
Anna Pileggi, Executive Director
123 Edward St., Ste. 1003
Toronto, ON M5G 1E2, Canada
(800) 665-FACE (3223)
E-mail: [email protected]
Web: http://www.aboutfaceinternational.org
- New School Programs
U.S. Office:
AboutFace USA
Rickie Gill, Executive Director
P.O. Box 969, Batavia, IL 60510-0969
(888) 486-1209
E-mail: [email protected]
Web: http://www.aboutfaceusa.org
- FAQ
- Online Newsletters
The American Cleft Palate - Craniofacial Association (ACPA)
For over 60 years, the American Cleft Palate Association (ACPA) has been the professional association for those working with cleft lip and palate and craniofacial conditions. Their members represent over 32 different disciplines and they focus on all aspects of life with these conditions through their professional journal, annual meetings, etc.
The Cleft Palate Foundation (CPF) was created in 1973 to be the public service arm of the ACPA. The purpose of the CPF is to educate, support research, and advocate for family-centered care. CPF is not a membership organization. An important part of the CPF mission is to assure that affected individuals and their families have access to up-to-date information that will enable them to make informed decisions about their care. To access CPF resources, find a certified craniofacial team near you, or just ask a question, contract them by e-mail or 24-hour support and information line.
Nancy Smyth, Director
1504 East Franklin St., Ste. 102
Chapel Hill, NC 27514-2884
(919) 933-9044 - 24 hour cleft line for parents
(800) 24-CLEFT
E-mail: [email protected]
Web: http://www.acpa-cpf.org
American Self-Help Group Clearinghouse
A detailed, constantly updated, subject-centered web site and their annual Self-Help Sourcebook make this one of our most valuable resources. The clearinghouse and the book are clearly "Your Guide to Community and Online Support Groups."
Director, Ed Madara, Cedar Knolls, NJ
(973) 326-6789
Web: http://www.selfhelpgroups.org
Birth Defect Research for Children, Inc.
This organization is dedicated to gathering information on birth defects, contributing to research, health education and prevention. We urge all to take part in their free, online registry. In the last few years they identified a cluster of babies born with clefts. Toxic waste was blamed for this cluster and now the people in that Tennessee town do not drink the poisoned well water! They are collaborating with medical communities, governments, and national health organizations all over the world.
Betty Mekdeci, Executive Director
930 Woodcock Rd., Ste. 225
Orlando, FL 32803
(407) 895-0802
Web: http://www.birthdefects.org
Candid Camera - Laughter Therapy
Laughter Therapy is a private non-profit organization, founded by Allen Funt. Mr. Funt had great interest in the healing powers of laughter. His wish, in starting the Laughter Therapy program, was to bring a smile, laughter, and hopefully, some therapeutic benefit to those with serious illnesses.
Laughter Therapy
Box 827
Monterey, California 93942
Web: http://candidcamera.com/cc7/cc7.html
Charlene Smith
13140 Coit Rd., Ste. 307, Dallas, TX 75240
(214) 570-9099 or (800) 535-3643
E-mail: [email protected]
Web: http://www.ccakids.com
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Consumer And Patient Health Information Section (CAPHIS) |
Craniofacial Foundation of America
Their extensive web site is a graphical consumer's guide to many craniofacial surgical procedures. A gem of a resource.
Terri Farmer
975 E Third St., Box 269
Chattanooga, TN 37403
(423) 778-9192 or (800) 418-3223
Web: http://www.craniofacialcenter.com
Disability Etiquette
By Judy Cohen. This booklet is one of the best we have ever seen on the subject. Simple, practical ways to greet and treat each other are here for over 16 different "disabilities." The page for "People Who Look Different" could change the world for thousands of us who do look different. We think every K-12 teacher in schools and faith communities, parents, and anyone training people to deal with the public should have a copy of Disability Etiquette. One copy is free and for bulk orders the booklets cost $1.00 each. Thank you Judy Cohen!
Publisher: Eastern Paralyzed Veterans Association
75-20 Astoria Blvd., Jackson Heights, NY 11370-1177
(800) 444-0120
Web: http://www.epva.org
FACES - The National Craniofacial Association
Lynne Mayfield, Director
P.O. Box 11082, Chattanooga, TN 37401
(423) 266-1632 or (800) 332-2373
E-mail: [email protected]
Web: http://www.faces-cranio.org
Forward Face: Helping Children with Craniofacial Conditions
Support for people with craniofacial conditions.
317 East 34th St., Ste. 901A, New York, NY 10016
(212) 684-5860 or (800) 393-FACE
Web: http://www.forwardface.org
Foundation for Faces of Children
New England parent support network for awareness and education. This site is for parents who are just learning that their child has a craniofacial condition. Award-winning FREE video for new parents of a child with a cleft (Understanding Cleft Lip & Palate, A Guide for New Parents). English and Spanish versions available.
258 Harvard St., #367, Brookline, MA 02446-2904
(617) 355-8299
E-mail: [email protected]
Web: http://www.facesofchildren.org
Genetic Alliance
Over 350 member organizations joined together for education, advocacy and public awareness. Free packets and many books for sale. Every library should have an updated copy of their biannual, 200-page International Directory of Genetic Advocacy Organizations and Related Resources.
Mary Davidson, Executive Director
4301 Connecticut Ave. NW, Ste. 404
Washington, DC 20008-2369
(202) 966-5557
(800) 336-GENE - Help Line
(800) 232-1370 - Partnership
E-mail: [email protected]
Web: http://www.geneticalliance.org
The Institute for Family-Centered Care
This powerful non-profit network is dedicated to making all health care for children family-centered. With their education programs, newsletter (Advances in Family Centered Care), seminars, printed materials, etc., they bring together professionals and parents for action.
Beverley Johnson, President
7900 Wisconsin Ave., Ste. 405, Bethesda, MD 20814
(301) 652-0281
E-mail: [email protected]
Web: http://www.familycenteredcare.org
Listen to Our Stories -
Words, Pictures, and Songs by Young People with Disabilities
This online site offers you the opportunity to step into the lives of some thirty young adults and children with disabilities. Here you will find poetry, essays, interviews, songs, journal writing, letters, and pictures; each tells a story about something essential - some kernel of meaning - in its young author's life.
March of Dimes Resource Center
Accurate, private, timely, one-on-one information and referral about pregnancy is offered to parents and professionals through their confidential toll-free number.
1275 Mamaroneck Ave., White Plains, NY 10605
(888) 663-4637 (9 a.m. - 7 p.m., EST)
011-914-997-4765 - International
Web: http://www.marchofdimes.com
Maternal and Child Health Library
The Maternal and Child Health Library is a vast guide to maternal and child health information. It offers a wide variety of electronic resources including databases, publications, resource lists, web links, the MCH Alert (their electronic newsletter), and other resources developed for health professionals, families, and consumers.
2115 Wisconsin Ave. NW, Ste. 601
Washington, DC 20007-2292
(202) 784-9770
E-mail: [email protected]
Web: http://www.mchlibrary.info
National Dissemination Center for Children With Disabilities (NICHCY)
Free information on disabilities and disability-related issues, personal response to your questions, Spanish resources available. A vast resource!
P.O. Box 1492, Washington, DC 20013
(800) 695-0285 (9:30 a.m. - 6:30 p.m., EST)
E-mail: [email protected]
Web: http://www.nichcy.org
National Foundation for Facial Reconstruction
Support to the Institute of Reconstructive Plastic Surgery located at the NYU Medical Center. Education programs, research, newsletter, etc.
New York, NY
(212) 263-6656
E-mail: [email protected]
Web: http://www.nffr.org
National Institute of Dental and Craniofacial Research (NIDCR)
A web site full of useful information. Free copies of Dry Mouth, a brochure which describes and explains dry mouth and includes lists of symptoms, causes, treatment options, and self-care tips, are available simply by contacting NIDCR. An online version is available on their web site. Since copyright laws do not apply to their publications, they encourage you to reproduce these brochures.
Bethesda, MD 20892-2190
(301) 496-4261
E-mail: [email protected]
Web: http://www.nidcr.nih.gov
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National Organization for Rare Disorders (NORD)
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National Organization on Disability (NOD)
A nonprofit network dedicated to promoting the full and equal community participation of all people with disabilities. In-depth programs that find the barriers and develop programs that will bring change.
910 Sixteenth St. NW, Ste. 600
Washington, DC 20006
(202) 293-5960
E-mail: [email protected]
Web: http://www.nod.org
Parents Helping Parents, Inc.
Professional and parent education and training on how to begin and maintain a parent support network.
3041 Olcott St., Santa Clara, CA 95054
(408) 727-5775
E-mail: [email protected]
Web: http://www.php.com
Specialized Training of Military Parents (STOMP)
Provides international medical information and training to military families who have children with special needs. Workshops, phone consultation, and presentations.
6316 S 12th St., Tacoma, WA 98465
(800) 5-PARENT or (253) 565-2266 (Overseas call collect)
E-mail: [email protected]
Web: http://www.stompproject.org
SupportWorks
PowerTools, an 8-page booklet published by SupportWorks, covers all the basics of building a healthy support network.
Joal Fischer, Director
500 East Morehead St., Ste. 222
Charlotte, NC 28202-2694
(704) 331-9500
E-mail: [email protected]
Web: http://www.supportworks.orgPowerTools
http://www.supportworks.org/shgbuild.htm#PowerTools
Brothers and Sisters: A Special Part of Exceptional Families
An important book by Thomas Powell and Peggy Ahrenhold Gallager.
Publisher: Paul H. Brookes Publishing Co.
The Fathers Network of Washington
An international network dedicated to meeting the needs that fathers of children with special needs have. National Fathers Network has combined the national and state web sites into one. There is something for everyone. They offer one of the best links sections of all disability sites, and now feature a bulletin board with six topic areas, which is being used by men and women from all over the country. Their calendar lists any and all disability events - local, regional, and national.
James May, Director
Kindering Center WSFN
Bellevue, WA
(425) 747-4004 ext. 4286
E-mail: [email protected]
Web: http://www.fathersnetwork.org
Sibshops - Workshops for Siblings of Children with Special Needs
By Donald J. Meyer and Patricia F. Vadasy. Powerful national program.
Publisher: Paul H. Brookes Publishing Co.
Web: http://www.seattlechildrens.org
(Search for "Sibshops")
Views From Our Shoes,
Growing Up with a Brother or Sister with Special Needs
Editor, Donald Meyer.
Publisher: Woodbine House
Uncommon Fathers
Powerful, honest collection of essays by fathers who were asked to reflect and write about the life-altering experience of having a child with a disability.
Publisher: Woodbine House