Disfigured

Menstuff® has compiled resources for information and support on the issue of Disfigurement.

Children: Resources for Information and Support
Teenagers: Resources for Information and Support

AboutFace A nonprofit support network for facial difference. Their chapters and resources include newsletters, videos, and publications. Anna Pileggi, Executive Director, 123 Edward St., Ste. 1003, Toronto, ON Canada M5G 1E2, 1.800.665.FACE (3223) or info@aboutfaceinternational.org or www.aboutfaceinternational.org U.S. Office:, Rickie Anderson, Director, P.O. Box 969, Batavia, IL 60510, 1.888.486.1209 or aboutface2000@aol.com or www.aboutfaceusa.org

The American Cleft Palate Craniofacial Association (ACPA) Dedicated to all aspects of facial birth defects. Organization for health care professionals representing over 32 disciplines. Journal, newsletter, annual meeting, etc. 104 S Estes Dr., Ste. 204, Chapel Hill, NC 27514, 1.919.933-9044 - 24 hour cleft line for parents. or 1.800.24.CLEFT or cleftline@aol.com or www.cleftpalate-craniofacial.org

American Self-Help 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". Ed Madara, Director, 100 Hanover St., Ste. 202, Cedar Knolls, NJ 07927, 1.973.326.6789 or www.selfhelpgroups.org

Birth Defect Research for Children, Inc. Resources and free information for parents of children with any kind of birth defect. Their ongoing research project, National Birth Defect Registry, focuses on the environmental causes of birth defects. Free monthly online newsletter. Betty Mekdeci, Ste. 225, Forrester Bldg., 930 Woodcock Rd., Koger Ctr., Orlando, FL 32803, 1.407.895.0802 or abdc@birthdefects.org or www.birthdefects.org

Broken Bodies, Healing Hearts, Reflections of a Hospital Chaplain Gretchen W. TenBrooks' paperback book is a delight. Her actions and thoughts as she walks the halls of Johns Hopkins Hospital are fun, deep, and insightful. A wonderful gift for your favorite clergy person, social worker, or child life specialist. Haworth Press Inc. 800.429.6784

Children's Craniofacial Association Publications, newsletter, retreats, and well-written brief guides to understanding many different syndromes. Charlene Smith, 13140 Coit Rd., Dallas, TX 75240 214.570.9099 or 800.535.3643 or contactCCA@ccakids.com or www.ccakids.com

Clinical Trials To find out about clinical trials going on all over the world, see the National Institute of Health web site. www.clinicaltrials.gov

Consumer Medical Information Please take a look at this award winning site. It is the "brain child" of the Consumer Section of the Medical Library Association. There are 31 different medical sites to search in. www.caphis.mlanet.org/directory/

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, Thompson Children's Hospital, 975 E Third St., Chattanooga, TN 37403, 423.778.9192 or 800.418.3223 or www.erlanger.org/cranio

FACES - The National Craniofacial Association People with craniofacial deformities resulting from birth defects, injuries, or disease may apply to this nonprofit organization for financial assistance for non-medical costs. Newsletter, information, booklets, etc. Lynne Mayfield, Director, Box 11082, Chattanooga, TN 37401, 423.266.1632 or 800.332.2373 or faces@mindspring.com or faces@faces-cranio.org or www.faces-cranio.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. Please take a look at their web site and become an advocate in your community for Family-Centered Care! Beverley Johnson, President, 7900 Wisconsin Ave. Ste 405, Bethesda, MD 20814, or www.familycenteredcare.org

March of Dimes Resource Center Accurate, timely, one-on-one information and referral about pregnancy is offered to parents and professionals. 888.663.4637 (9 a.m. - 7 p.m., EST) or 011.914.997.4765 - International or www.marchofdimes.com

National Foundation for Facial Reconstruction Support to the Institute of Reconstructive Plastic Surgery located at the NYU Medical Center. Education programs and research, newsletter. 317 E 34th St., Rm. 901, New York, NY 10016, 212.263.6656 or NFFR@earthlink.net or www.nffr.org

National Health Information Center Vast, in-depth, federally funded medical information network.  P.O. Box 1133, Washington, DC 20013-1133 or 800.336.4797 or www.health.gov/nhic

National Oral Health Information Clearinghouse (NOHIC) 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 NOHIC. 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.1 NOHIC Way, Bethesda, MD 20892-3500 or 301.402.7364 or nidr@aerie.com or www.nohic.nidcr.nih.gov

National Organization for Rare Disorders (NORD) NORD will do individual research for you. They publish an amazing comprehensive 1152-page paperback book that lists all the networks for specific conditions. Be sure your medical or public library has updates copies! P.O. Box 1968, Danbury, CT 06813-1968 or 203.744.0100 or 800.999.6673 or orphan@NORD-RDB.com or www.rarediseases.org

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 16th St. NW, Washington, D.C. 200006 or 202.293.5960 or www.nod.org

SupportWorks This nonprofit self-help clearinghouse sponsors inexpensive telephone conference meetings for support groups or nonprofit organizations. Call them for details or link to learn about their SupportLink Program. PowerTools, an 8-page booklet published by SupportWorks, covers all the basics of building a healthy support network. 1125 E Morehead St., Ste. 209, Charlotte, NC 28204-2849 or 704.377.2055 or www.supportworks.org and Power Tools at www.supportworks.org/shgbuild.htm#PowerTools

Twin Peeks Press A catalogue of books of interest to persons with disabilities, health professionals, health organizations, librarians, and teachers. Box 129, Vancouver, WA 98666 or 360.694.2462

Children: Resources for Information and Support


Forward Face: The Charity for Children with Craniofacial Conditions Support for people with craniofacial conditions. Newsletter, booklets, videos, meetings, etc. Award winning video for new parents of a child with a cleft. 317 E 34th St., Ste. 901, New York, NY 10016 or 212.684.5860 or 800.393.FACE or www.forwardface.org

Foundation for Faces of Children New England parent network. Fund raisers go for awareness, education, and parent support. Award winning video for new parents of a child with a cleft. 258 Harvard St., #367, Brookline, MA 02446-2904 or 617.355.8299

National Center for Education in Maternal and Child Health (NCEMCH).Education and information services in maternal and child health. Free, top quality booklets, etc. 2000 15th St. N, Ste. 701, Arlington, VA 22201 or 703.524.9333 or www.ncemch.org

Parents Helping Parents 3041 Olcott St., Santa Clara, CA 95054 or 408.727.5775 or www.php.com

National Information Center for Children and Youth With Disabilities (NICHCY) Free information on disabilities and disability-related issues, personal response to your questions, Spanish resources available. Box 1492, Washington, DC 20013-1492 or 800.695.0285 (9:30 a.m. to 6:30 p.m/ET or nichcy@aed.org or www.nichcy.org

National Parent Network on Disabilities Established to provide a presence and national voice for parents of people with disabilities. Linda Shepard, Director, 1130 17th St. NW, Ste. 400, Washington, DC 20036 or 202.463.2299 or npnd@cs.net or www.npnd.org

State Parent to Parent Centers U.S. parents who have special needs children are privileged to have federally funded parent-to-parent advocacy networks in every state.  8161 Normandale Blvd, Minneapolis, MN 55437 or 952.838.9000 or 888.248.0822 or pacer@pacer.org or www.pacer.org

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, Tacoma, WA 98465 or 800.5.PARENT or 253.565.2266 or wapave9@washingtonpave.com or www.washingtonpave.org/stomp.html

Teenagers: Resources for Information and Support


Articles about growing up with facial difference The January 1999 Forward Face newsletter is written by teenagers. For your copy, contact Forward Face: The Charity for Children with Craniofacial Conditions. Chicken Soup for the Teenage Soul I and II, ISBN 1-55874-468-1

Developing Social Skills. Issues for Adolescents with Chronic Illnesses and Disabilities A well-written booklet. Prepayment is required. University of Minnesota-NYCYD, Box 721, University of Minnesota, Minneapolis, MN 55455 or 612.626.2825

How Rude! The Teenagers' Guide to Good Manners, Proper Behavior, and Not Grossing People Out Alex J. Packer, Ph.D. Nobody's polite anymore, why should you be? The author answers with, "Because good manners are good for you. they impress people. They build self-esteem. They can help you get what you want from life - friends, fun success, and respect. And they do not cost anything." A zippy fun workbook that can change lives. Free Spirit Publishing, www.freespirit.com

Meeting the Challenge: Training Program for Adolescents with Special Needs An outstanding program. Really can change lives of parents and children! Dr. Kathleen Kapp-Simon, Cleft Lip and Palate Institute, Northwest University, 240 E Huron St., Chicago, IL 60611, 312.503.5957, www.craniofacialinstitute.com

National Center for Youth With Disabilities - NCYD National Center for Children with Chronic Illness and Disabilities - NCCI A vast treasure of resources for improving health and social functioning of young people with disabilities. They have top-quality bibliographies on hundreds of pertinent subjects. NCYD, University of Minnesota, Box 721, 420 Delaware St. SE, Minneapolis, MN 55455 or 612.626.2825 or ncyd@gold.tc.umn.edu or www.cyfc.umn.edu/nrl/ 

Saving Face. The Washington Post, March 11, 2001. Reporter Michael E. Ruane walks us through many life events and into the daily life of Daniel Greely, 14, who was born with the severe unilateral Tessier #4-10 cleft. This story is a treasure of a resource for those who care for children born with major facial disfigurements and would be a powerful part of any teenage curriculum on difference. For a fee you can read the text online in the archives of the Washington Post (http://www.washingtonpost.com). If you need help, go to your public library. We are nominating this accurate, inspiring report for the Genetic Alliance annual Art of Reporting Award.

Taking Charge: Teenagers Talk About Life and Physical Disabilities See Woodbine House under Children with Facial Difference - A Parent's Guide for contact and ordering information. U. Minnesota KDWB Variety Family Resource Center. Elizabeth Latts has coordinated a vast family library with many of our favorite resources about teaching social skills to teens and young children with disabilities. U. Minnesota Gateway, 200 Oak St. SE, Ste. 160, Minneapolis, MN 55455-2017, 612.624.0997 or www.peds.umn.edu/peds-adol/

What Teens Need to Succeed, Proven Practical Ways to Shape Your Own Future Benson, Galbraith, and Espeland. A book we think every house with teens should have! Proven stories of how to shape your future and how to make a difference in the lives of the people around you. Eye opening fun checklists and quizzes, hundreds of resources (web sites, etc.) and actions to take are all here in this 355-page paperback. Free Spirit Publishing or www.freespirit.com 

Writing Down The Days, 365 Creative Journaling Ideas for Young People By Lorraine M. Dahlstrom. A top notch gift for any teacher, child, parent or Child Life Specialist! Fun, challenging and full of interesting historical facts that spur the writer into each days writing "assignment". ISBN 1-57542-086-4, Free Spirit Press or 612.338.2068 or www.frespirit.com

Resources for Genetic Information and Support Chance Choices An inexpensive high school genetics curriculum designed around a hypothetical family with several genetic disorders. Foundation for Blood Research, 69 U.S. Rte. 1, Scarborough, ME 04074, 800.639.8605 or www.fbr.org/publications/publications.html

Genetic Alliance Over 350 member organizations joined together for education, advocacy and public awareness. Free packets on subjects ranging from starting a support group to media tips. For a small fee, you can also get Informed consent: Participation in Genetic Research Studies and their biannual 200-page International Directory of Genetic Advocacy Organizations and Related Resources. Every library should have an updated copy. Mary Davidson, Executive Director, 4301 Connecticut Ave. NW, #404, Washington, DC 20008, 1.202.966.5557, 1.800.336.GENE - Help Line, 1.800.232.1370 - Partnership or info@geneticalliance.org or www.geneticalliance.org

The Genetic and Rare Diseases Information Center Free access to specialists who can provide accurate, reliable, up to date information to patients and families. The Human Genome Research Institute and NIH Office of Rare Diseases sponsor the center. 1.888.205.2311 (M-F, 12 p.m.-6 p.m. EST. 1.888.205.3223 TTY; 1.202.966.5689 - Fax or gardinfo@nih.gov or www.nhgri.nih.gov

Genetic Counseling Briefs Published in The Genetic Resource (vol.6, #1, 1991). This article introduces us to the training and importance of the genetic counselor. For a copy of this article, send a SASE to Let's Face It (address at bottom of page).

Human Genome Project A worldwide effort to map human genes and lead us to finding causes for disease and prevention information. 900 Rockville Pike, Bldg. 31, Rm. 4B09, National Institute of Health, Bethesda, MD 20892, www.nhgri.nih.gov

Starting and Sustaining Genetic Support Groups From the Kitchen Table to the Boardroom A gem of a resource! Available at the Genetic Alliance's web site. See Genetic Alliance for contact information.

Understanding Gene Testing Free from the National Cancer Institute. See National Cancer Institute for contact and ordering information.

Source: © 2002 Let's Face It, Box 29972, Bellingham, WA 98228-1972; 1.360.676.7325 or letsfaceit@faceit.org

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