41. Facial/ Craniofacial Anomalies Children With facial differences A Parent s Guide by Hope Charkins, MSW (themother of a child with Treacher Collins syndrome), Woodbine House, Inc, http://www.kumc.edu/gec/support/craniofa.html

Facial anomalies / Craniofacial conditions Apert Syndrome Arhinia (absent nose) Blepharophimosis , Carpenter Syndrome, Chotzen Syndrome, Crouzon Syndrome ear anomalies Goldenhar Syndrome (hemifacial microsomia) ... Costello Syndrome , Jackson-Weiss, Kabuki Syndrome Nager Miller Syndrome neurofibromatosis , Microtia (Ear Atresia) , Moebius Syndrome, Opitz, Pfeiffer Syndrome, Pierre Robin Syndrome Robinow Syndrome Romberg Syndrome Stickler Syndrome , Sturge-Weber Syndrome, Treacher Collins syndrome , and other craniosynostosis conditions AboutFace International, information and emotional support to individuals with facial differences and their families 123 Edward St., Suite 1003, Toronto, Ontario, Canada M5G 1E2 Phone: 416.597.2229 or 1.800.665.3223 (FACE) - Fax: 416.597.8494 E-mail: info@aboutfaceinternational.org Web site: www.aboutfaceinternational.org/main.html Syndromes and Conditions Craniosynostosis and Positional Plagiocephaly Support Web site: www.cappskids.org/ Children's Craniofacial Association PO Box 280297, Dallas, TX 75243-4522 Phone: 972.994.9902 - Fax 972.240.7607

42. Disabilityexchange.org - Taxonomy The person with an evident facial difference, unusual facial feature, Individuals with facial differences acquired through accident or illness, http://www.disabilityexchange.org/taxonomy/detail.php?fid=10&path=10_1183&c=2&ti

43. Facial Nerve Center Information about the support group and links to other sites about facial differences . Archive of of the Facial Nerve Center s newsletter, Expressions. http://www.upmc.edu/FacialNerve/

Facial Nerve Center Multidisciplinary Approach Information about the center's multidisciplinary approach of evaluating and treating facial paralysis and paresis caused by injury or disease of the facial nerve or muscles. E.K. Manders, MD, serves as the medical director of the center, coordinating the evaluations. Physical Therapy and Facial Rehabilitation Background information about the physical therapy process and how to schedule an appointment. Services under the direction of J. VanSwearingen, PhD, PT. Treatment: Facial Reanimation Details on the many innovative facial paralysis treatments offered by the Facial Nerve Center. Referring Patients to the Center The telephone numbers and address to use to refer patients to the center. Research Interests at the Facial Nerve Center A list of research manuscripts written by the faculty and staff of the Facial Nerve Center. Facial Paralysis Support Group Information about the support group and links to other sites about facial differences. Expressions Newsletter Archive Archive of of the Facial Nerve Center's newsletter

44. NACFC 2005 On-Line Registration Form Making a world of difference in the world of facial differences The NorthAmerican Craniofacial Family Conference. July 1719, 2005 http://www.cleftadvocate.org/NACFC2005Registration.html

North American Craniofacial Family Conference Making a world of difference in the world of facial differences... The North American Craniofacial Family Conference July 17-19, 2005 Your Role In Advocacy Home Our Mission Our Projects 501(c)3 Status ... Contact Us NACFC 2005 Las Vegas, NV - July 17 - 19, 2005 Learn More Resources Insurance Advocacy ... Pathfinders SPECIAL RATES! Monarch Suite at $65.00/night (plus applicable taxes) BOOK NOW to guarantee this price! Larger suites available at discounted prices for this event... Click here! Alexis Resort 375 E. Harmon, Las Vegas, NV For Personal Service, call Ann Groux (702) 796-3397 Monday - Friday 8AM - 5PM Pacific Click here for a printable map to the hotel An optional family fun day on Wednesday, July 20!! AboutFriends Learn More!! Remember to mention the NACFC and/or AboutFace USA at time of booking! Register On-Line Now! NACFC Challenge! cleft Advocate Your On-Line Source for Education and Inspiration! Find a cleft team and other resources in your area! National Conferences and Local/Regional Events! ... Dedication A program of AboutFace USA We subscribe to the HONcode principles of The Health On Net Foundation This Cleft Advocate page was last updated 8/26/2005 Please provide the following information: By clicking the Submit Crown (Loft) $115.00

45. CleftClub.com - Cleft Lip & Palate Support Group And Information Center - EStore Book Children With Facial Difference A Parents Guide Popular For me andfor several other parents of children with facial differences, this book has http://www.cleftclub.com/modules.php?name=Amazon&asin=0933149611

46. Facial Disfigurement Provides emotional support and information to persons with facial differences . Networking of people with facial disfigurement in order to support each http://my.webmd.com/hw/health_guide_atoz/shc29fad.asp

var guid_source = ""; var guid_source_id = ""; //unused var encodedurl = ""; WebMD Today Home WebMD News Center XML News via RSS Member Services WebMD University My WebMD Find a Physician Medical Info Check Symptoms Medical Library Health Tools Clinical Trials ... Women, Men, Lifestyle Who We Are About WebMD Site Map You are in Medical Library Our Content Sources Ask A Question Clinical Trials Health Guide A-Z Health Topics Symptoms Medical Tests Medications ... Forward Face Facial Disfigurement AboutFace USA National. Founded 1991. Provides emotional support and information to persons with facial differences and their families. Network database of 900+ families who have similar concerns. Promotes public education and awareness. Newsletter, information and referrals. WRITE: AboutFace USA P.O. Box 969 Batavia, IL 60510-0969 CALL: 1-888-486-1209 E-MAIL: info@aboutfaceusa.org WEBSITE: http://www.aboutfaceusa.org http://www.cleftadvocate.org VERIFIED: 4/15/2005 Let's Face It National. US Branch of International. Founded 1987. Networking of people with facial disfigurement in order to support each other. Information. Free annual 40 page resource list with over 200 resources available by sending 9" x 12" self addressed envelope with a note about yourself. WRITE: Let's Face It P.O. 29972

47. David Roche - Keynote Speaker, Humorist, Performer Our goal is to assist all persons with facial differences to have a positive A great place for people with facial difference to make contacts. http://www.davidroche.com/links.htm

DAVID ROCHE'S FAVORITE LINKS The National Arts and Disability Center www.dcp.ucla.edu/nadc/ Director Olivia Raynor ensures that this is the major web site for the arts/disability connection. It includes vital information about web site accessibility. Marc Goldman of Damon Brooks Associates www.damonbrooks.com Marc has many years in the business and is the primary representative of disabled speakers and performers nationwide. Marc builds enduring relationships with his clients. Speaking Circles(R) International www.speakingcircles.com This is the virtual home of Speaking Circles, developed by my good friend and mentor, Lee Glickstein. The Speaking Circle environment is where I first learned to feel comfortable as a public speaker (and you can, too!). Let's Face It www.nas.com/~letsfaceit/ My friend Betsy Wilson is the director of this national networking organization for people with facial difference. They publish the Resource Guide for People With Facial Difference annually. Every healthcare professional should have a copy! The ELA Foundation www.ela.org

48. Healthnet News Vol. XV, No. 2 Summer 1999 of facial difference such as cleft palate or facial feature asymmetry.Other types of facial differences may include vascular birthmarks or hemangiomas http://library.uchc.edu/departm/hnet/summer99.html

HEALTHNET NEWS VOL. XV, NO. 2 SUMMER 1999 Lyman Maynard Stowe Library University of Connecticut Health Center Back to the Healthnet News Index TABLE OF CONTENTS UPDATE - Healthnet Internet resources list updated PROFESSIONAL READING - Trash or treasure - medical information on the Internet ORGANIZATIONS - Let's Face It - for people with facial differences NETNEWS - Y2K and health care - Cut and paste the medical way - New edition of Merck manual available online - Important information for and about men - Resources on prevention and treatment of skin disorders FOR YOUR CONSIDERATION -Recently published books: *Harvard Medical School Family Health Guide UCHC RECENT ACQUISITIONS * Lyme disease - Daniel W. Rahn and Janine Evans. * Physician's Desk Reference for nonprescription drugs and dietary supplements UPDATE HEALTHNET INTERNET RESOURCES LIST UPDATED We recently updated the list of recommended Internet resources on our web site. The category "Government Resources" was eliminated and each site previously listed here has been placed in a more specific category - i.e. Healthfinder is now listed under "Diseases and Medical Conditions - General" as is MEDLINEplus since the primary focus of these sites is to offer information on diseases and medical conditions and their treatments. A new section "Traveler's Health" has been added with links to sites for information about recommended immunizations for travel to different countries and warnings and precautions for overseas travel.

49. AAMP Conference Page Patients with facial differences A program established for professionals whocommunicate and care for persons with facial differences. http://www.res-inc.com/aamp.htm

52nd Meeting of the American Academy of Maxillofacial Prosthetics October 24-26, 2004 Ottawa, Ontario CANADA Fairmont Chateau Laurier AAMP Home Page Conference Overview Registration Fees Conference Site ... Call for Papers Submit Abstracts Registration Form Conference Administration Conference Overview Giving Back: to our colleagues, our patients and ourselves T his program will feature practitioners who are primary practitioners for head and neck cancer, and AAMP members sharing experiences in rehabilitation of the cancer patient using endosteal implant therapy. This includes patients who have also had microvascular reconstructions of the maxilla and mandible. There will be a unique experience for all delegates to demonstrate various techniques and research in maxillofacial prosthetics during a dedicated morning session of table clinics and poster presentations. All delegates are extended an invitation to bring select casts, models, materials, and innovations to share during this time. A hands-on interchange between members during this forum may offer just the subtle nuance required to meet a difficult patient need: the more experienced the practitioner, the more potential to bring forward this information. It is an opportunity for all to "give back" to the Academy. Since 1988

50. NORD - National Organization For Rare Disorders, Inc. for and on behalf of individuals with facial differences and their families . of the challenges and abilities of people with facial differences. http://www.rarediseases.org/search/orgdetail_full.html?org_name=AboutFace Intern

51. NORD - National Organization For Rare Disorders, Inc. AboutFace USA welcomes individuals whose facial differences are present at birth,such as cleft lip and palate, Apert, Crouzon, Treacher Collin, microtia, http://www.rarediseases.org/search/orgdetail_full.html?org_name=AboutFace USA

52. Baby Facial: Infants Monkey With Face Recognition: Science News Online, May 18, facial features so that they no longer detect subtle facial differences trouble recognizing facial differences between members of other species. http://www.sciencenews.org/20020518/fob1.asp

Science News Books. Subscribe to Science News ... Science News for Kids Math Trek A Lawyer's Math Library Food for Thought A Cold Observation about Wine (with recipe) Science Safari Spying Natural Hazards TimeLine 70 Years Ago in Science News Science News e-LETTER. ... Week of May 18, 2002; Vol. 161, No. 20 , p. 307 Baby Facial: Infants monkey with face recognition Bruce Bower Between ages 6 months and 9 months, a baby accomplishes a heads-up feat, of sorts. That's when he or she transforms a budding aptitude for detecting animal faces in general into a proficiency at discerning different human faces. This finding bears on the controversial issue of what types of knowledge a baby comes equipped with at birth. PRIMATE FACE-OFF. Using images such as these, scientists found that 6-month-old babies discerned new faces, both monkey and human, from ones they had already seen. Adults and 9-month-olds distinguished only human faces. Science Infants learn to recognize faces through a process that exchanges perceptual breadth for depth, say psychologist Olivier Pascalis of the University of Sheffield in England and his colleagues. By 9 months of age, daily exposure to people has prepped babies' perceptual system to identify human-specific facial features so that they no longer detect subtle facial differences between members of other species, Pascalis' group proposes in the May 17 Science "Perhaps we're looking at how innate knowledge about faces changes over time due to visual experience," Pascalis says. "But it's impossible to say for sure, since experience with faces begins as soon as a child is born."

53. Funny Face of what it is like for a youngster to live with a facial difference. to children and families touched by AVMs or other facial differences. http://members.aol.com/djbreslow/funnyface/

Funny Face Written by Debbie Breslow with narration by Kenny Breslow FUNNY FACE is a heartwarming story about a four-year-old (now age seven) born with a facial anomaly known as an arteriovenous malformation (AVM) . Although AVMs are typically found in the brain and spine, Kenny's AVM affects his nose. This causes it to be bigger and redder than any other child his age. As a result, he must endure unconscious staring, innocent questioning and harmful teasing. In this story, Kenny's mom reveals the true experience of what it is like for a youngster to live with a facial difference. AVMs look a lot like hemangiomas, another anomaly found on the face. However, the treatment of an AVM is much different than the treatment of a hemangioma. The story is geared to suit a wide variety of readers: from medical and school professionals to children and families touched by AVMs or other facial differences. The book's underlying message is also critical for everyone who needs educating about the importance of not judging others by physical appearance alone. FUNNY FACE relates a young boy's medical and psychosocial experience in an easy-to-read story, now available for purchase by writing to

54. Dr Stelnicki Pediatric Plastic Surgery, Cleft, Craniofacial And Asthetic Surgica Many patients with facial differences have their deformity corrected, but areleft disfigured by the presence of external scarring. http://www.drstelnicki.com/2fit.htm

The Facing It Together Foundation What we do: Children and adults with facial differences need our help. Medical problems that produce an alteration in facial appearance dramatically affect their lives. Whether this change is the result of a birth related disorder or an acquired problem such as trauma or facial cancer, patients with these problems need support. Although not life threatening, changes in facial appearance dramatically alter the way society views and interacts with a person. Our facial appearance is the first impression people in our family and local community have of all of us. When this appearance is altered, so is the reaction of others. Therefore, unlike other medical conditions such as heart disease, liver disease, lung disease, etc., facial disorders dramatically impact the way patients interact with society on a daily basis. In our area, one out of every five hundred children born have some sort of facial disfigurement. In addition, one in every thousand adults has some form of facial deformity related to trauma or cancer. Yet in spite of the large number of people affected by these problems, very little is being done to improve their standard of living. There has been no major advancement in the treatment of these problems in over the last decade. In Florida, there is little to no research being conducted to improve the diagnosis, treatment, or prevention of these problems. More importantly, our state is only beginning to help patients and families deal with the fall of these complex problems.

55. NUTRITION, FEEDING, AND EATING She is the author of Children with Facial Difference A Parents Guide (Woodbine Due to your child s facial differences, it may take longer to master http://www.treachercollinsfnd.org/health.htm

56. Domain Name Renewal And Web Hosting From Network Solutions Illuminate the lives of those with facial differences. Ways You Can Help.Distribute CLEFTLINE flyers and brochures to your local hospitals and pediatric http://www.charitablechoices.org/charities/CLEFTLINE/questions.asp

charitablechoices.org Renew Now If you are the current registrant for this domain name* and wish to continue the registration on the domain, you must immediately renew the domain to ensure the name is not deleted from your account. Backorder If you are not the current registrant and are interested in getting this domain name, you can submit a backorder through our trusted partner, SnapNames. There is no upfront fee or risk to place a backorder. Learn More Search For Another Domain Enter a domain name: www. .com .net .org .info .biz .us * Once a domain name has been renewed, it may take up to 48 hours to be reactivated. Web hosting packages from Network Solutions POPULAR CATEGORIES Travel Car Rental Hotels Airline ... Stocks RELATED CATEGORIES Charitable Trusts Charitable Gift Funds National Christian Charitable Foundation Planned Giving ... Service Agreement , and Legal Notice

57. Child Health Alert Newsletter There are as many reasons for facial differences as there are faces themselves . A very good general resource about facial differences is published by http://www.childhealthalert.com/newsletters/jun98.htm

Child Health ALERT Volume 16 A Survey of Current Developments Affecting Child Health Care June 1998 Children With Stomach PainWhat Happens When They Grow Up? Children who have frequent stomach aches make many visits to their health care providers, but the most typical result is that no clear medical diagnosis is found. Researchers have looked into psychological causes, and their studies have suggested that children with repeated stomach aches may come from anxious families or from families with physical health complaints. However, our understanding of what really causes this problem is far from clear-cut. Furthermore, there is little known about what becomes of these children when they become adults. Now, researchers from the United Kingdom report findings from a national study that followed a representative group of 5362 children born in 1946: the children were studied when they were 7, 11, and 15 years of age, and again at age 43. Children were considered to have repeated problems with stomach pain if they reported having pain during the previous year at each of the three interviews at ages 7, 11, and 15. For comparison, the authors studied survey participants who didn't report abdominal pain or reported it only occasionally. The researchers also took into account a variety of other information, including physical symptoms and psychiatric disorders reported in adult life.

58. Child Health Alert Newsletter April 96 Reasons for facial differences are almost as numerous as the differences There is a new and very good general resource about facial differences. http://www.childhealthalert.com/newsletters/apr96.htm

Child Health ALERT Volume 14 A Survey of Current Developments Affecting Child Health Care April 1996 When Is An Asthma Inhaler Empty? One of the major advances in treating asthma in children has been the development of metered-dose inhaler, devices which deliver a specific dose of asthma medication each time the child activates the inhaler. However, inhaler canisters contain a certain number of doses; if the child uses the inhaler more than the number of times listed on the product, the canister may still "work", but the dose of medication that is dispensed may vary. Researchers found that most adult asthmatics they surveyed did not know how many doses their inhaler contained. When they were asked how they knew it was time to replace their inhaler, about three-quarters said they would make their judgements by shaking the inhaler, or by noticing changes in the pressure of the "puff', the taste, or similar means. One approach, recommended by some manufacturers, is to float the canister in water to estimate how much medication is left. While 8% of patients used this technique, the authors found it was not a reliable way to determine whether an inhaler has run out of medication. (Ogren RA et al: Annals of Allergy, Asthma, and Immunology, Dec 1996; pp. 485-489)

59. COMMUNICATION SKILLS FOR TEENS AND ADULTS Designed for people with facial differences Someone with a facial difference,a child or adult who feels selfconscious about how they look, http://www.forwardface.org/misc_text/education/communicat.htm

COMMUNICATION SKILLS FOR TEENS AND ADULTS Designed for people with facial differences Why? A smiling, warm and loving face tells the baby that the world is a good place and, by association so is he or she. A cold, withdrawn, depressed face signals danger in the world and again, by primitive association, the infant experiences feelings of being ill at ease and the need to be vigilant. All through life, we are communicating via our facial expression, the eye contact we do or do not make, the cues our faces provide as to our mood. People look at our faces so that they can figure out how best to communicate with us and if we are listening to them. Someone with a facial difference, a child or adult who feels self-conscious about how they look, nonverbally communicates this feeling with the possibility that the entire process becomes awkward and uncomfortable. Unfortunately, someone with a craniofacial condition cannot walk down the street anonymously. The looks of strangers can feel intrusive and are resented. NOT have to be the solution!

60. Vascular Anomalies Center An informational and support network for people with facial differences, theirfamilies, friends and professionals. They publish an excellent resource book, http://www.birthmarks.org/resources_support.asp

Support Groups and Other Resources Support groups are an invaluable resource to anyone dealing with the difficulties of having a child with a vascular birthmark. These groups can provide names of other families affected with similar conditions, referrals to physicians who have treated similar conditions successfully, and information on the latest research into new treatment options, and developments in the cause of these birth defects. Please feel free to contact any of the resources listed below. The American Academy of Dermatology 930 N. Meacham Road, P.0. Box 4014 Schaumburg, IL 60168-4014 (847) 330-0230 Fax (847) 330-0050 www.aad.org Write and request the "New Guidelines for Treating Hemangiomas." The Vascular Birthmarks Foundation P.O. Box l06 Latham, NY 12110-0106 hvbf@aol.com Linda Shannon is Executive Director, and Milton Waner, M.D., is Medical Director. The organization is a non-profit resource providing the latest and most accurate information on the proper diagnosis and treatment of hemangiomas and vascular birthmarks. The National Vascular Malformations Foundation 8320 Nightingale Street Dearborn Heights, MI 48127-1202

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