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 55455-2023, 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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