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Anaplastology______________ 2-3

Meet AboutFaceUSA’s newpresident ______ 12

North AmericanCraniofacialFamily ConfereneMaterials_____ 5-11

Winter 2005Volume 21, Number 1

See pages 6-11 for completeinformation about the NACFCconference including speakers,resort & registration information.

“The Perfect Flaw” is a new, multiple-award-winning documentary about David Roche, ahumorist and public speaker from Mill Valley,Calif., who was born with a venous malformationand gets speaking engagements worldwide,including a performance at the White House. Hiscondition is a benign tumor consisting of swollenblood vessels, and he uses a lifetime of publicexperiences regarding his face for much of his stagematerial. The film captures Roche offstage as wellas on – with his wife, friends and storytellingstudents – and revisits the harrowing medical andsocial ordeals of his early years. It also lets himarticulate the priceless spiritual perspective that hisexperiences unexpectedly gave him.The filmmaker, Mike Grundmann, is a LosAngeles Times editor who was born with a cleft

lip and palate.

Q (Grundmann): Mystrategy when growing up andbeing ridiculed at school waspretending it didn’t bother me— even after I got home fromschool, even when there wasblood on my shirt from beinghit. What were your copingtechniques? Did any of themwork?A (Roche): I had similar copingtechniques. Lots of denial. I alsoused humor. And I adopted thetechniques of the teasers andbecame feared for my mouth. Ofcourse, I am ashamed of this now,but the truth is that it worked verywell – though only in the shortrun.

Q: Wasn’t your face a make-or-break proposition?A: My struggle has not been a clear-cut one. I haveto keep working at it. Baseball is called a game offailure because the best batters make an out 7 outof 10 times. Well, I would say I’m a .400 hitter inlife, which is great, but that means I make an outmore often than not. I have to walk back to thedugout of life (our apartment) and get my attitudetogether for the next at-bat. Luckily, I have learnedto surround myself with good teammates (friends)and an excellent manager (Marlena).

Q: What’s the most important lesson your facehas taught you?A: Like I say in my show, it has forced me to lookinside for my strength.

Q: You and your wife,Marlena Blavin, makeregular presentationsin schools, titled“Love at SecondSight.” How do thekids react?

“The Perfect Flaw”—An Interview

NACFC 2005July 17-20, 2005

L a s V e g a s

David Roche

2 AboutFace USA

S U P P O R T

Suzanne Verma, MAMSSharon Haggerty, MAMS

Anaplastology is the art and science of restoring a malformedor absent part of the human body through artificial means. Bycombining technical, medical, and artistic skills with patienceand compassion, an anaplastologist can create custom-made, life-like prostheses that meet the needs of each patient.

Facial and somato (body) prosthetic devices serve anessential role in restoring the physical and psychological wellbeing for patients with missing or disfigured anatomicalstructures due to congenital abnormalities, trauma, or diseasesuch as cancer. Patients may be able to gain renewed func-tion, appearance, and confidence after receiving a prostheticear, eye, nose, finger, or hand. Renewed self-image may helppatients feel better about themselves, more accepted intosociety, and enable them to function as they had before theirloss. This restoration of self-esteem is an invested accomplish-ment for both the patient and anaplastologist or facial pros-thetist. The primary goal of prosthetic rehabilitation is tohelp patients improve their quality of life and uphold theirself-image during their traumatic psychological adjustment. Atruly successful prosthesis may go unnoticed in public,allowing patients to go about life without drawing attention tothat aspect of their physical appearance.

Each prosthesis is unique in its design, makeup, andmethod of retention. For example, if a patient has adequatebone quality and is willing to adhere to a daily hygieneregime, they may be a candidate for an osseointegratedimplant-retained prosthesis. Titanium craniofacial implants,similar to dental implants, are surgically placed in the boneand used to anchor the silicone prosthesis with bar and clip, ormagnet retention. Those patients unable to utilize retentionthrough osseointegration may require the use of traditionaladhesives, or the prosthetic design may rely on the inherentretention characteristics of the patient’s anatomy. Due to theuniqueness of each patient’s needs, it is important that his orher treatment plan for reconstruction be defined with theexpertise of various members of a multi-disciplinary Craniofa-cial or Maxillofacial Team.

A multi-disciplinary team approach to craniofacialreconstruction offers numerous advantages. By utilizingvarious specialists, patients can receive optimal treatment in anappropriate sequence. There are many individuals who playan important role in rehabilitating craniofacial patients,

ranging from medical andsurgical professionals, torehabilitative and supportgroups. The most important“team member”, of course is thepatient! A team approach topatient treatment may alsofacilitate the incorporation ofadvanced technologies into theplanning and fabrication processof creating a prosthesis. Nu-merous technologies can beutilized, such as rapidprototyped medical modelsmade from CT scans, CNCmilling, and ComputerizedColor Formulation software toname a few. TheAnaplastologist creating theprosthesis has a wealth ofresources available, as well asthe creative freedom toformulate patient specificsolutions. These technologieshelp health care professionalsin diagnosis, surgical andprosthetic planning, andfabrication of the finalprosthesis.

The fabrication process ofcreating the prosthesis entailsa series of appointments withthe anaplastologist. A sculp-ture made to look like themissing anatomy is made outof wax. The final prosthesis ismade out of medical gradesilicone to simulate the textureand appearance of skin. Thesilicone is colored to matchthe patient’s various skintones, including small detailssuch as blood vessels andfreckles. Unfortunately,

Improving patients quality of life

Patient post-treatment withimplant retained auricular (ear)prosthesis in place.Anaplastologist: S. Verma, COMPRU, 2002

Patient without auricular (ear)prosthesis.Anaplastologist: S. Verma, COMPRU, 2002

The gold bar attached to twotitanium implants will be usedto retain the prosthesis throughbar and clip retention.Anaplastologist: S. Verma, COMPRU, 2002

Anaplastology

SPECIAL Conference Information/Registration Newsletter 3

S U P P O R T

present-daysiliconematerials andcoloringcomponentsremaindurable foronly a shortperiod oftime. Withproper care, aprosthesis canlast as long as3-5 years.Siliconeprosthesesmay lose their color, flexibility, texture, and possibly tear alongthe margins due to environmental factors encountered by thepatient. Changes in the appearance and function of a prosthe-sis may require repair or replacement of the prosthesis, whichcan be an inconvenience to the patient. The quest to find amethod to stabilize the color of silicone is a shared visionamong many disciplines involved in prosthetic rehabilitation.To help make the process of wearing a prosthesis easier forpatients, anaplastologists and material scientists continue toput forth research efforts to find ways to improve the materialsused in the fabrication of prostheses.

The field of anaplastology functions within the largermedical community, in which cross-disciplinary communica-tion and cooperation is essential in order to provide patientswith successful prosthetic restorations and a positive treatmentexperience.

Although a prosthesis is created to mimic the form andcolor of the missing or deformed anatomy as much as pos-sible, there are still limitations. Current technologies, materi-als, and research provide valuable tools for professionals in thefield.

Anaplastology is an evolving discipline, where high-techtools are often utilized, but a traditional goal remains: toprovide honest, competent and compassionate treatment tothose patients who seek our services.

Suzanne Verma, MAMS, is an anaplastologist at the Center forMaxillofacial Prosthetics, Baylor College of Dentistry, in Dallas,Texas. Sharon Haggerty, MAMS is the director andanaplastologist at Custom Prosthetic, Ltd., in Seattle, Washington.

The American Anaplastology Association (AAA) servesas an “Information Center,” uniting specialists involvedin anatomical restorations, and encouraging under-standing and acceptance of facial and somato (body)prosthetic treatment among healthcare specialistsworldwide.

While an American association, the AAA has a diversemembership made up of professionals and students from21 countries. International experts coming from the fieldsof anaplastology, maxillofacial prosthetics, medicalillustration, ocularistry, prosthetics and orthotics, dentallaboratory technology, prosthodontics, materials research,clinical cosmetology, biomechanical engineering, medi-cine, psychology, and other allied fields participate in themultidisciplinary task of improving patient treatmentoutcomes through research and information exchange.

The AAA’s professional development activities are de-signed to respond to the professional and educationalinterests of its members. The AAA annual conference andpublications offer timely topics on various aspects of therestorative prosthetic devices, as well as workshops onnew and innovative developments in biomaterials,advanced technologies in craniofacial reconstruction, andtechniques and approaches in prosthetic fabrication.Since the first meeting, over 1300 people have attendedthe annual conference.

For questions regarding membership or the organizationplease contact the AAA Administration Office, or visit theweb site at: www.anaplastology.org

American Anaplastology AssociationPO Box 27440Seattle, WA 98165 USAPhone and Fax: 206-268-0311Email: aaa@anaplastology.org

Public relations: Suzanne Verma, MAMSAAA President: Rosemary Seelaus, MAMS

Patient with implant-retainedorbital (eye) prosthesis.

(Anaplastologist: R. Seelaus, COMPRU;Ocularist: J. Koroscil: LeGrand Northwest Ocularists, Inc.

Edmonton, Alberta, Canada, 2002)

Anaplastology—Continued from Page 2

4 AboutFace USA

A: 4-5 year olds: “Are you a monster? Do you know FreddyKreuger?” 6-8 year olds: “Does your face hurt? How manyoperations did you have? How do you eat?” 9-10 year oldboys: “Did you play sports?” 11-13 year olds: “Did otherkids tease you a lot? How did you stop them? Did you have agirlfriend?” 11-13 year olds (to Marlena): “What did yourparents say?” 14-18 year olds: “Cool!”

Q: Because you get speaking/performing gigs all over theworld, you travel a lot, which puts you among crowds ofstrangers all the time. Does that take courage, even still?A: Yes, it does. There is anonymity in a big city, which I like.But there is also permission to stare, which is a normal humanactivity, though unpleasant for the receiver. When I canperform for those strangers, it’s a good thing. I’m writing thisfrom New York City, where I have been with Marlena for afew days now. I love New Yorkers. They seem to be very muchthemselves. Old people look really old, obese people lookreally obese, Jewish people look very Jewish, African peoplelook African. I realized with a shock that I may not be faciallydifferent enough by New York standards.

Q: Have you ever had the fantasy, like I have, that everyonewas blind, and thus they could judge you based only on whoyou really are rather than what you look like?A: Not really. But it is a nice fantasy. Can I borrow it for awhile? Sometimes blind people want to feel my face. Theirhands are really gentle. One person said that the raised bloodvessels were sort of like Chinese Braille.

Q: Perhaps the human face is a test, as in “don’t take it tooseriously” or “don’t confuse it with its owner.”A: Well, don’t take TV and movies and magazine faces tooseriously. They are not faces; they are marketing concepts. Oryou can see them as works of art. Actually, the right side ofmy face deserves a little attention. It has done just as muchwork as the left, but nobody is that interestedin it. Do you see the right side of my face listed in the creditsof “The Perfect Flaw”? No.

Q: How hard was it quitting your day job several years back,to devote yourself to performance because that’s what youdecided is most important? And how well is it going?

A: Hard, hard, hard. Harder than that. Fear. Much fear. Earlyon, I self-produced a show figuring I could make up to$5,000. But I failed to note that I would be competing withthe World Series and Mill Valley Film Festival. I drew a smallcrowd and lost almost $1,000. I did the show feeling sick atheart. But in the middle of that show, I had an epiphany: Irealized how good my show is and how good a performer Iam. And that feeling has never left me. I was raised working-class, to get up in the morning, go to work, sit down and dowhat I was told, and expect a check every two weeks. My lifedoesn’t work that way now. But I’m doing well and have neverlooked back. I pay the bills and am able to save some. I’mdoing creative work that I love all the time.

Q: If you were born without a facial difference, would youstill be funny?A: Absolutely. I am totally confident about my sense ofhumor. Although, like most comedians, I would probably betelling jokes about airline food.

Q: Our readers, undoubtedly inspired by your success, maynow try something new, which can also mean scary. What’syour advice on dealing with the fear? What has worked foryou, and what hasn’t?A: Fear is just part of the deal. How could I not be afraid?Everybody is afraid. I’m just more open about it. I think theway to courage is through fear; the way to faith is throughdoubt. My advice: Never try to repress negative feelings. Livewith them. They go away after a while and actually can be thesource of much creativity. Find your spiritual sweet spots andgo there often. For me: nature, relationship, my own creativ-ity. These are three areas I have to pay attention to regularly tofeel strong and sane. Be physical. Use your body in whateverway you can, including to get pleasure. Surround yourselfwith supportive people.

Q: Readers, information on the film is at www.mikegrundmann.com. Dave, where’s everything we’re ever wanted toknow about you?A: Thank you, Jay, it’s great to be on the “Tonight Show”again. Try www.davidroche.com.

David Roche will be a Special Guest Speaker at theNACFC. Topic – My Face – A Gift

The Perfect Flaw—Continued from front page

JOIN US! - cleftAdvocate / Pathfinder ProgramThe Pathfinder Outreach Network continues to make a difference in the lives of families across the United States and

beyond. At the Family-to-Family Connection (www.cleftadvocate.org/ftfc.html), the network hosts one of the most activeand successful support listservs for the craniofacial community. Addressing feeding difficulties, social issues, speech therapy,early intervention, post-operative care and more, caregivers and patients come together to offer insight to others traveling aroad of uncertainty. Additionally, Pathfinders reach out in their communities to provide support for families, and interfacewith cleft/craniofacial teams and other professionals. To become a Pathfinder, or for support and educational materials,contact Debbie Oliver at (702) 769-9264, via e-mail at debbie@aboutfaceusa.org, or visit our website atwww.cleftadvocate.org. Directors and members of all craniofacial organizations are encouraged to participate.

AboutFace USAo f I l l i n o i s

P.O. Box 969Batavia, IL 60510-0969

USA

123 Edward St., Ste. 1003Toronto, ON M5G 1E2

Tel 1-416-597-2229or 1-800-665-FACEFax 1-416-597-8494

info@aboutfaceinternational.orgwww.aboutfaceinternational.org

Executive DirectorAnna Pileggi

International

Non-Profit OrgU.S. Postage

PAIDCrystal Lake, ILPermit No. 315

Dr. Reisberg received his dental degree from Case Western ReserveUniversity in 1977. He went on to complete a Residency in HospitalDentistry at Michael Reese Hospital and Medical Center in Chicago.He received a specialty certificate in Prosthodontics from Tufts Univer-sity in Boston in 1980 and one in Maxillofacial Prosthetics from TheUniversity of Chicago in 1981. Since then, he has been Director of theMaxillofacial Prosthetics Clinic at The University of Illinois MedicalCenter in Chicago (UIC). In 1998, he was named Medical Director ofThe Craniofacial Center there. Dr. Reisberg is a professor in the De-partment of Surgery in the UIC College of Medicine and the Depart-ment of Restorative Dentistry in the UIC College of Dentistry.

Dr. Reisberg specializes in the care of pediatric and adult patientsborn with cleft lip and palate and other craniofacial birth conditions. He also treats patients whohave suffered facial trauma or have had cancer surgery of the mouth or face. At the UIC Cranio-facial Center, he works with a team of medical and dental specialists and allied health profession-als to provide functional, cosmetic, and psychological normalcy for his patients.

In addition to his clinical practice, Dr. Reisberg has contributed to many scientific journalsand textbooks and has lectured extensively in the United States and abroad. He is certified by theAmerican Board of Prosthodontics.

Dr. David Reisberg

P.O. Box 969Batavia, IL 60510-0969

Tel 1-888-486-1209Fax 1-630-761-2985

info@aboutfaceusa.orgwww.aboutfaceusa.org

Charitable Organization501(C)(3)

32-0085490

USA DirectorRickie Gill

OUR VISION — At AboutFace USA, our vision is to foster acceptance of people with facial differencesso they may participate fully in society with self-worth and dignity. Everyone wants to be valued for whothey are as individuals – for our talents, our interests, our personalities, our strengths. Sometimes it seemssociety, in general, values people largely based on their appearance. At AboutFace USA, we look beyondthe physical appearance and see the person inside. Recognizing the challenges and contributes of indi-viduals with facial differences is an important part of what we do. Seeing and sharing the endless possi-bilities is one of the many strengths of AboutFace USA

David Reisberg, DDSPresident

Christian CorsigliaVice President

David J. Reisberg, DDS

President,AboutFace USA

Dawn EllisonTreasurer

John BuranoskySecretary

MembersSusan Habakuk, M.EdKathy Kapp-Simon, Ph.DGerry Gedroic Lichterman

B O A R D O F D I R E C T O R SRickie GillExecutive Director

Debbie OliverProgram Director

M O V I N G O R C H A N G E O F A D D R E S S ? L E T U S K N O W .