Resources

In addition to the information and resources CCA provides (see programs and services),
we have assembled a list below, we believe you will find helpful.

Check Out the CCAKids Blog

Information and Support for Specific Conditions

APERT SYNDROME
Apert Web Page
A delightful full-service web page maintained by Don and Cathy Sears.
Don & Cathie Sears
www.apert.org

BELL’S PALSY
NINDS Bell’s Palsy Information Page
Located on the National Institute of Neurological Disorders and Stroke web site. An easy-to-understand and comprehensive page for your questions.
www.ninds.nih.gov/disorders/bells/bells.htm

CLEFT LIP/PALATE
American Cleft Palate-Craniofacial Assocation (ACPA)
Family Services
On June 30, 2017, the Cleft Palate Foundation merged with the American Cleft Palate-Craniofacial Association (ACPA).
The new ACPA Family Services will offer patient and family programs with continued growth in the future. Professionals and families will now be working more closely together to build cleft and craniofacial awareness and improve care. We look forward to continuing to be a part of your cleft and craniofacial journeys.
http://www.cleftline.org/

Cleft Advocate, a program of AmeriFace
An online resource for patients and families dealing with cleft lip and palate. Founded by a parent, Debbie Oliver, who is truly “Tackling the Health Care and Insurance Issues that Concern You.”
www.cleftadvocate.com

Feeding Your Baby
Feeding Your Baby will give you the facts you need to feed a baby with a cleft. Whether you are a new parent or caregiver, a doting relative or a health care professional, this video will guide you through the special techniques and bottles to help create an enjoyable, satisfying and productive feeding experience for a baby with a cleft palate. Feeding Your Baby includes step-by-step instructions for using a variety of special bottles demonstrated by families who once had the same questions and concerns you may have now. The video includes a frequently asked questions (FAQ) segment as well as breastfeeding and cleft palate treatment team information.
For a complimentary copy, please contact us by phone or e-mail:
http://www.cleftline.org/parents-individuals/feeding-your-baby/

MOEBIUS SYNDROME
Moebius Syndrome Foundation
Newsletters
Annual meetings
Vicki McCarrell, President
660-834-3406
E-mail: vmccarrell@mid-mo.net
www.moebiussyndrome.com
https://www.facebook.com/moebiussyndrome/

The Many Faces of Moebius Syndrome
The mission of the many faces of moebius syndrome is to create a better tomorrow for ourselves and our children with Moebius Syndrome by educating the general public and spreading global moebius syndrome awareness.
http://www.moebiussyndrome.info/
https://www.facebook.com/Manyfacesofmoebiussyndrome/

NAGER/MILLER SYNDROMES
Foundation for Nager and Miller Syndromes
The Foundation for Nager and Miller Syndromes (FNMS) is an international support group dedicated to helping those affected by these two similar and extremely rare, genetic conditions which involve moderate to severe facial and limb anomalies, but do not usually affect intellect.
These syndromes often affect one’s ability to see, hear, breath, eat, walk, talk and write. FNMS serves as an information clearing house to help educate families and professionals about Nager and Miller syndromes. FNMS’ extensive library of resources and medical reports on these rare conditions are available by request. Challenged families join the FNMS network for support, referrals and sharing of helpful experiences.
DeDe Van Quill, Director
800-507-FNMS
E-mail: ddfmns@aol.com
www.fnms.net

NEUROFIBROMATOSIS
Children’s Tumor Foundation
Ending Neurofibromatosis through research.
E-mail: info@ctf.org
www.ctf.org

Neurofibromatosis, Inc. (NFI)
Join our mission to find treatments and a cure for neurofibromatosis.
301-918-4600
800-942-6825
E-mail: nfinfo@nfinc.org
www.nfinc.org

VASCULAR BIRTHMARKS
Sturge-Weber Foundation
We exist to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness.
Karen Ball, Founder and Director
800-627-5482
www.sturge-weber.org

Hemangioma Hope
A family network.
Cindy Dougan
814-898-1054
E-mail: cdouganHH@aol.com

Vascular Birthmarks Foundation
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance for individuals with birthmarks.
Dr. Linda Rozell-Shannon, PhD President and Founder
877-823-4646
www.birthmark.org

VELO-CARDIO-FACIAL SYNDROME
Northeast VCFS Support Group
603-898-6332
E-mail: MLADJA@aol.com

Beckwith-Wiedemann Children’s Foundation
This information and support network is full of parenting and medial information. Get their new free DVD and learn all about the diagnosis, treatment, and challenges of this syndrome.
Cheryl Hendrickson
425-338-4610
E-mail: www.bwcfcheryl@aol.com
www.beckwith-wiedemannsyndrome.org

Children’s Skin Disease Foundation
CSDF enhances its full educational services with camps on both coasts of the US. Ask for their DVD and you will see how wonder-filled camp can be for these special children.
925-947-3825
www.csdf.org

Books for Children

Wonder
By R.J. Palacio
Wonder is the story of August (Auggie) Pullman, born with a facial difference that prevented him from going to a mainstream school—until now. He’s about to enter 5th grade at Beecher Prep, and if you’ve ever been the new kid, then you know how hard that can be. The thing is Auggie’s just an ordinary kid, with an extraordinary face. But can he convince his new classmates that he’s just like them, despite appearances?
You can order a special edition copy of Wonder from the CCA webstore or apply for a discount rate for bulk purchase by contacting the office.

Fearless, a Book of Poems
By Bradley Harding, illustrated by Dan Gremminger
Now available on Amazon in eBook form. All of us at CCA wish to thank our good friends, author Bradley Harding and illustrator, Dan Gremminger for making this possible. Their generosity and dedication to CCA is heartwarming!

Fearless is an inspiring collection of poems and illustrations created for children with craniofacial challenges. Originally published in 2001 by Children’s Craniofacial Association, the small regional release was immediately embraced by children and families affected by facial difference. This 10th anniversary edition has been redesigned for the eBook platform.

The Adventures of Prickly Pear and Happy Hoglet and Pit Bully 
By Edward Buchanan, MD
These two children’s books are written by Dr. Buchanan, part of the Texas Children’s Hospital Craniofacial Team and help children and parents prepare and empower themselves to cope with bullying or teasing and how to deal with emotions of all kinds.

The Courage to Be Kind
By Jenny Levin and Rena Rosen
In The Courage to Be Kind, authors Jenny Levin and Rena Rosen teach children and parents how to act and respond when they see someone who looks different. Learn with Sam and Ellie as they encounter and interact with several kids in different ways. Ellie is blunt and often offensive. Sam tries to find common ground with each person and provides an example of how to behave.

The dramatization of each difference includes photographs and a list of frequently asked questions so kids and parents can learn about various syndromes together. Through a series of scenarios, The Courage to Be Kind offers a tool to facilitate conversations about kindness and to teach with the art of compassion.

Elmer
By David McKee
David McKee has woven a story about an elephant named Elmer who is the only elephant in the jungle who is patchwork instead of gray. We are invited to share what happens when Elmer gets tired of being different. This is a story about laughing with, instead of at, something different.
Publisher: Lothrop Lee and Shepard Books, 1989

I Like Me
By Nancy Carlson
“Wonderful in its simplicity, here’s a story that will help kids feel good about themselves.” — Boston Globe

It’s Okay to be Different
By Todd Parr
Mary Hassler, mother of Claire, who was born with Apert Syndrome, alerted us to this delightful children’s resource. She says, “The book has vibrant illustrations and very simple words that can be used effectively to generate discussion about all sorts of differences. My 4 and 6 year olds love it.”

Proud of Our Feelings
Beautiful watercolor illustrations and text to help children and caregivers discover, have fun, and be proud of their feelings.
Magination Press
E-mail: magination@apa.org
www.maginationpress.com

Smile with Simon
By Patricia A. Simon, RN
Simon, a bright, red cardinal, hatched from his shell with a big gap in his beak. The gap made it hard for him to eat. Simon was not strong enough to fly. One day, he accidentally fell out of the nest and couldn’t get back to his family. Patty discovered the little bird and realized he suffered from the same thing as she, a cleft lip. A story of friendship, love, acceptance, and kindness, this playful picture book for children shares the importance a smile has on others. It teaches a powerful lesson-despite people’s differences, we are alike and beautiful.

We Can Get Along, A Child’s Book of Choices
By Lauren Murphy Payne
Ages 3-8. In simple affirming words and enchanting illustrations, this book teaches young children to think before they speak or act and to treat others the way they want to be treated. The focus is on kindness, respect, tolerance, and responsibility. What a book! We think the whole world could use a little of this one.
Free Spirit Publishing
Minneapolis, MN
612-338-2068
800-735-7323

You Are Special
By Max Lucado
Every day the small wooden people called Wemmicks do the same thing: stick either gold stars or gray dots on one another. The pretty ones with smooth wood and fine paint, as well as the talented ones, always get stars. But the ones like Punchinello who aren’t as talented, or have chipped paint, get ugly gray dots. In this heartwarming children’s tale from bestselling author Max Lucado, Eli the woodcarver helps Punchinello understand how special he is–no matter what other Wemmicks may think. It’s a vital message for children everywhere: Regardless of how the world evaluates them, God cherishes each of them, just as they are.

Additional Titles at Free Spirit Press
Whether at home, school, or out in the world, all kids face challenges in their lives. No matter how many choices, changes, and opportunities young people encounter, Free Spirit has had the same mission for more than 30 years: to provide children and teens—and the adults who care for and about them—with the tools they need to think for themselves, overcome challenges, and make a difference in the world.

Additional Titles at Magination Press
Magination Press® was created out of a desire to publish innovative books that would help children deal with the many challenges and problems they face as they grow up.
Written for ages 4 through 18, these books deal with topics ranging from the everyday — starting school, shyness, normal fears, and a new baby in the house — to more serious problems, such as divorce, attention deficit disorder, depression, serious injury or illness, autism, trauma, death, and much more.
Most of our books are written by mental health professionals or those who work closely with them and with children. Our books help children understand their feelings, provide information about the topic or situation, and offer extensive practical coping strategies. A comprehensive Note to Parents is usually included to help guide parents, therapists, social workers, and teachers in using the book.
Magination books are not preachy or didactic: They feature sensitive, lively, sometimes humorous writing, along with exquisite, evocative illustrations. They are a pleasure to look at and to read.
In 1997, American Psychological Association (APA) acquired Magination Press. As the world’s largest and most prestigious publisher of books in psychology, mental health, and development, we at APA are proud and delighted to publish Magination books.

Books for Young Adults

Diary of a Beautiful Disaster
By Kristin Bartzokis
Born with Treacher Collins syndrome, a facial abnormality, Kristin learned at an early age the importance of strength–strength when confronted with multiple surgeries, strength when confronted with stares and questions, and strength when confronted with the constant knowledge that you will never look, or be, like everyone else.

Kristin Bartzokis’ life story is one of achievement and inspiration, an example of an unbreakable spirit and unwavering fortitude. No matter what life has thrown at Kristin, she has turned challenges into triumphs and used obstacles as stepping stones.

Diary of a Beautiful Disaster empowers readers to embrace their own uniqueness and boldly go forth into the world being exactly who they are. Kristin reminds us that although life can be complicated and messy, it is always, above all, beautiful.

Wonder
By R.J. Palacio
Wonder is the story of August (Auggie) Pullman, born with a facial difference that prevented him from going to a mainstream school—until now. He’s about to enter 5th grade at Beecher Prep, and if you’ve ever been the new kid, then you know how hard that can be. The thing is Auggie’s just an ordinary kid, with an extraordinary face. But can he convince his new classmates that he’s just like them, despite appearances?
You can order a special edition copy of Wonder from the CCA webstore or apply for a discount rate for bulk purchase by contacting the office.

Ride High Pineapple
By Jenny Woolsley
Apart from having a face that is different, Issy is like many other teenagers. She experiences friendship ups and downs, a secret crush, and bouts of anxiety. Issy is also great at drawing and skateboarding.

Written as a raw, truthful, journal, follow Issy in Ride High Pineapple, to find out how she uses the analogy of a pineapple, her friends, and her skateboarding, to overcome the adversities in her life.

Ugly
By Robert Hoge
When Robert Hoge was born, he had a tumor the size of a tennis ball in the middle of his face and short, twisted legs. Surgeons removed the tumor and made him a new nose from one of his toes. Amazingly, he survived—with a face that would never be the same.
This poignant memoir about overcoming bullying and thriving with disabilities shows that what makes us “ugly” also makes us who we are.

World Enough and Time
By Emma C Williams
Anna Jones is an intelligent and spirited girl of 15, whose everyday experiences of growing up are overshadowed by a rare condition called Goldenhar syndrome. While Anna approaches her life with humour and determination, she is haunted by the inescapable fact that she looks a little different from other girls. Despite the support of her friends and family, she remains convinced she will never be loved – especially not by the gorgeous and intelligent Michael. Anna’s life and schooling is regularly interrupted by a variety of hospital visits, each one of which seems designed to make her feel even more different from the other girls. As she counts down the days until the major surgery that will change the course of her life forever, Anna becomes increasingly doubtful as to whether she will ever be truly normal. World Enough and Time is an often funny, sometimes painful but ultimately uplifting novel about growing up and finding your feet in the world.

Books for Adults

Babyface, A Story of Heart and Bones
By Jeanne McDermot
The riveting true story of a child, a family, and life on the outskirts of normal.
When Jeanne McDermott’s second child, Nathaniel, was born with Apert syndrome—a condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens—she was completely unprepared for it. In this extraordinary memoir, McDermott calls on her dual roles as science journalist and mother to share her family’s traumatic yet enriching experience. Though McDermott and her family had to endure Nathaniel’s harrowing surgeries and the stares and comments of strangers and well-meaning friends, they were also transformed by the boy’s amazing strength and exuberant personality. With grace, courage, and humor, McDermott shows readers how a child with a rare syndrome can illuminate “a whole new way of seeing, not simply him and others, but ourselves.”

Children with Facial Difference: A Parents’ Guide
Each chapter of Children with Facial Difference includes parent statements, reassuring and useful bits of information and insights from parents of children with facial difference. These statements help alleviate feelings of isolation and provide comfort and support. With a foreword by Joseph E. Murray, M.D., a Nobel Prize winner in medicine and a pioneer in craniofacial surgery, this book also includes a glossary of terms, a reading list, a resource list of organizations, and an index.

Diary of a Beautiful Disaster
By Kristin Bartzokis
Born with Treacher Collins syndrome, a facial abnormality, Kristin learned at an early age the importance of strength–strength when confronted with multiple surgeries, strength when confronted with stares and questions, and strength when confronted with the constant knowledge that you will never look, or be, like everyone else.

Kristin Bartzokis’ life story is one of achievement and inspiration, an example of an unbreakable spirit and unwavering fortitude. No matter what life has thrown at Kristin, she has turned challenges into triumphs and used obstacles as stepping stones.

Diary of a Beautiful Disaster empowers readers to embrace their own uniqueness and boldly go forth into the world being exactly who they are. Kristin reminds us that although life can be complicated and messy, it is always, above all, beautiful.

Facial Shift
By Dawn Shaw
Your face, and your life, has been radically altered. Accident, military injury, medical condition…the result is the same. You are now having to confront the world with a “different” face, and understandably this has wrecked your self-image and undermined your confidence, leaving you with a thousand questions and concerns including:
•What should I do when people stare at me?
•What are my medical options?
•Wouldn’t it be easier if I just stayed home and didn’t go anywhere?
•And most significantly, How will this physical change affect current and future relationships?
•Will anyone ever be able to love me?
In Facial Shift, author Dawn Shaw addresses those questions and more. Dawn was born with a rare tumor, the removal of which left her face half-paralyzed. She has lived her entire life, nearly half a century, with a different face, yet has been able to lead a happy and productive life. She doesn’t allow her different face to stop her from interacting with the world, and neither should you. A practical, but empathetic book for those grappling with a facial difference.

Our Altered Life
By Charlene Beswick
After a healthy twin pregnancy, Charlene and Mark were shocked to be told that one of their boys had been born with half of his face undeveloped. In seconds, the happy family future they had been planning disintegrated into turmoil and uncertainty.

Laugh out loud funny in places, heart-wrenchingly sad in others, and refreshingly honest at all times, Our Altered Life is Charlene’s wonderful account of how she struggled to forgive herself and bond with a baby she didn’t expect. Follow her transition through grief and anger, challenges and triumphs, loss and acceptance, to love for the life she has now with two children she wouldn’t change for the world.

Reflections from a Different Journey
By Stanley D. Klein Ph D. and John Kemp
Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew (McGraw-Hill, 2004) is a collection of 40 inspiring short essays by successful adults with different disabilities. Essay authors were asked to write about something they wished their own parents had read or been told while they were growing up.

Sam, The Boy Behind the Mask
By Tom Hallman Jr.
Pulitzer Prize winner Hallman tells the life story of Sam, now a teenager, from Portland, Oregon, who was born with a severe facial Hemangioma. All the universal issues about family, fitting in, medical miracles and inner strength are woven into this dramatic real life story. We could not put it down!
Publisher: G.P. Putnam & Sons

Ugly
By Robert Hoge
When Robert Hoge was born, he had a tumor the size of a tennis ball in the middle of his face and short, twisted legs. Surgeons removed the tumor and made him a new nose from one of his toes. Amazingly, he survived—with a face that would never be the same.
This poignant memoir about overcoming bullying and thriving with disabilities shows that what makes us “ugly” also makes us who we are.

Uncommon Beauty
By Margaret Meder
Parents of children with special healthcare needs face many challenges. Uncommon Beauty—Crisis Parenting from Day One is the guidebook written by a mom who’s been there. Author Margaret Meder delivers specific, pragmatic strategies for everything from crossing emotional hurdles to handling financial realities; from navigating hospitals to becoming your child’s best advocate; from accepting the help of others to finding an inner strength. Meder’s down-to-earth wisdom comforts and empowers the parents who need it the most, and her words of hope reveal the secret to living a life more meaningful than ever thought possible. Discover the truth of Uncommon Beauty.

Bullying

Pacer Center National Bullying Prevention
Founded in 2006, PACER’s National Bullying Prevention Center actively leads social change, so that bullying is no longer considered an accepted childhood rite of passage. PACER provides innovative resources for students, parents, educators, and others, and recognizes bullying as a serious community issue that impacts education, physical and emotional health, and the safety and well-being of students.

#ChooseKind
Choose Kind is a national movement inspired by R.J. Palacio’s debut novel, Wonder. Teaching students to be accepting of differences and choosing to act kind toward others is a powerful lesson that will stay with these kids throughout their lives.

Beyond Differences’ No One Eats Alone
No One Eats Alone, Beyond Differences’ most popular program, is a stand-alone event that takes place during lunch at school, including curriculum that can be used before or after the day. During your event, students make a difference on their own middle school campus by making sure that everyone is included at lunch and students sit with new friends and classmates.

Beyond Differences is carrying a simple message to cities across this nation: We believe that a new day is dawning. A new day in which all kids feel included, valued and accepted by their peers. At Beyond Differences we are dedicated to helping teens and schools make social inclusion the new reality.

KidsHealth
Teens Health
Nemours Children’s Health System guide to bullying with helpful talking points, videos, and advice.

UK’s Anti-Bullying Pro
The Diana Award’s Anti-Bullying Campaign involves a number of different projects aimed at reducing bullying in schools. One of our main projects is the Anti-Bullying Ambassadors programme which has trained over 22,000 young people across the UK to lead on anti-bullying campaigns in their schools.

Special Products & Equipment

Real Food Blends
Originally inspired by their young tube-fed son, AJ, who is now the company’s “Chief Inspiration Officer,” and a belief that we all deserve real food, Julie and Tony Bombacino sought to create a company that provided easy access to 100% real food meals and nutritional variety to tube-fed people and their families, at home or on the go.

Years later and with well over 1 million meals sold, you will still only find 100% real food in our meals. No corn syrup, preservatives or synthetic additives/fillers – just a variety of simple real ingredients to nourish your body and soul.

EazyHold
The EazyHold ® universal cuff grip assist is an affordable general use strap that helps people accomplish daily living activities independently despite physical conditions or disabilities impacting grip strength. The flexible universal cuffs attach securely to get a grip on handles of utensils, tools, toys and more! Our adaptable assistive device is made of soft, flexible food-grade silicone, hypoallergenic and latex free. Eazy to use, Eazy to clean and Eazy on the hands!

Medi-Kid Pediatric Limb Immobilizers
Custom fit, 100% cotton controls for arm or leg movement after surgery or injury. Designed and patented by parent whose son had a cleft, they come in adult and children’s sizes. Can be worn over or under clothing. The smaller ones come with thumb hole or without! Can even be comfort for an x-ray.

NutriSqueeze
The NutriSqueeze pouches are disposable stand-up pouches for easy storage and serving of shakes, purees, and drinks. When cups and straws wont work, NutriSqueeze pouches are easy to use and can be taken anywhere. A great alternative to feeding syringes.

Reflo Training Cup
The Reflo Smart Cup ™ is a training cup. It’s a smart alternative to sippy cups and a great transitional tool for your children to learn to drink from an open cup. No buttons or other complicated mechanisms to operate. It’s as easy as drinking from any ordinary cup without the worry of big spills due to the patented Reflo ™ insert that controls the flow of beverage anywhere along the cup’s rim and at virtually any angle. BPA-free, phthalate-free and dishwasher safe, the Reflo Smart Cup ™ is designed for safety and hygiene with no moving parts to trap dirt and germs.

Recommended for all ages as a smart alternative to “sippy cups” which have been associated with dental and speech problems.

Toys-R-Us
Toy catalog for children with special needs.

Organizations

Beauty Redefined
Beauty Redefined, a 501(c)(3) nonprofit dedicated to promoting positive body image online and in live speaking events, is run by identical twins Lexie Kite, Ph.D. and Lindsay Kite, Ph.D. Since establishing Beauty Redefined in 2009, Lexie and Lindsay have become leading experts in the work of body image resilience through research-backed online education available on their website, social media, and through speaking events to tens of thousands across the US. While many well-intentioned people promote positive body image from the basis of helping women realize and embrace their beauty, Beauty Redefined changes the conversation about body image by telling girls and women they are MORE than beautiful. Lexie and Lindsay assert positive body image is about feeling positively toward your body overall, not just what it looks like.

Beyond Differences
Every student should feel accepted, included, and valued by their peers. Beyond Differences works directly with middle and high school students, on campuses and online, to help them promote social inclusivity within their schools.

Changing the Face of Beauty
Changing the Face of Beauty is an approved 501(c)3 nonprofit corporation that is committed to equal representation of people with disabilities in advertising and media worldwide. Changing the Face of Beauty empowers people living with disabilities by advocating for inclusive imagery, thus changing perceptions and igniting futures in the media and advertising industries.

Public Figures

Peter Dankelson
Peter Dankelson was born 10 weeks premature weighing less than three pounds. He had over 10 serious birth defects resulting in a diagnosis of Goldenhar Syndrome also known as Oculo-Auriculo-Vertebral Syndrome (OAVS). Peter required a tracheostomy and feeding tube, was in NICU for almost four months, and has had 28 surgeries. He is a sophomore at Libertyville High School and enjoys playing electric guitar, gaming on Xbox, and pranking students with his fake ear.

Because of his life experiences, Peter deeply related to the book Wonder by R.J. Palacio about a boy with a facial difference. Peter speaks with students after they read the book, comparing his real-life story it to the fictional character in Wonder. Since 2012, Peter has promoted #ChooseKIND at schools around the country and connected with over 15,000 students. He is the recipient of the 2016 Teen Advocacy Champion of Hope Award by Global Genes Alliance (GlobalGenes.org).

Peter was a Patient Ambassador for Children’s Hospital of Michigan from 2010-2015. He served on the Youth Advisory Council, conducted television interviews, and spoke at faculty meetings. Peter has also advocated in Washington D.C. on behalf of Children’s Hospital Association (childrenshospitals.org).

Peter is available to speak on site or live video. His motto is “Be comfortable with who you are so that others will be comfortable around you.” Peter uses humor to discuss his differences, encouraging students to ask questions and embrace diversity.

Carly Findlay
Carly Findlay is a blogger, writer, speaker and appearance activist based in Australia. She challenges people’s thinking about what it’s like to have a visibly different appearance, living with Ichthyosis.

Jono Lancaster
Jono Lancaster is a public speaker and activist, with Treacher Collins Syndrome, based in the U.K. He travels around the world meeting other families with TCS and speaking in schools about his journey to acceptance how they can practice kindness and love themselves. He is the founder of Love Me, Love My Face Foundation which provides support for families with TCS.

J.R. Martinez
Full of Heart: My Story of Survival, Strength, and Spirit
In 2003, nineteen-year-old Private J.R. Martinez was on a routine patrol when the Humvee he was driving hit an antitank mine in Iraq, resulting in severe injuries and burns on his face and more than one-third of his body. Out of that tragedy came an improbable journey of inspiration, motivation, and dreams come true. In Full of Heart, Martinez shares his story in intimate detail, from his upbringing in the American South and his time in the Army to his recovery and the indomitable spirit that has made him an inspiration to countless fans.

Rohan Murphy
Rohan Murphy is a nationally recognized youthspeaker that has spoken in over 40 states. Rohan, who lost his legs at birth, started to wrestle his freshman year of high school. After a successful high school wrestling career he went on to wrestle at Penn State University. In addition to wrestling, Rohan Murphy is also an accomplished powerlifter, competing in international competitions all over the world representing the USA.

Turia Pruitt
Turia Pitt is one of Australia’s most admired and widely recognized people. At 24, Turia was an ex-model, fitness junkie and successful mining engineer whose life was turned upside down when she became trapped in a grass fire while competing in a 100km ultramarathon. She was choppered out of the remote desert barely alive, with full thickness burns to 65 per cent of her body. Renowned for her pure grit, indomitable spirit and passion for humanitarian work, Turia has gone on to thrive in the ultimate story of triumph over adversity.

David Roche
David is an inspirational humorist, motivational speaker and performer who has transformed the challenges and gifts of living with a facial difference into a compelling message that uplifts and delights audiences around the world. What really makes David unique, however, is his remarkable spirit, warmth, wit and authenticity. He presents keynote speeches, entertainment and storytelling workshops at conferences for associations, corporations, non-profit, educational and disability organizations.

Lizzie Velasquez
Lizzie Velasquez is a global motivational speaker, anti-bullying activist, social media personality, and author. Lizzie was born with a rare syndrome. At this time there are only 2 other people in the world that are known to be living with this rare syndrome. In December 2013, she took the stage at the inaugural TEDx AustinWomen, and gave a talk titled “How Do You Define Yourself?” that has garnered over 13 million views across the web. Her story has been featured on Katie Couric, The Today Show, The View, Huffington Post, Associated Press, AOL, MSN, and Yahoo! among many other national and international media outlets.

Insurance Help

Patient Advocate Foundation
Patient Advocate Foundation is a national 501 (c)(3) non-profit organization which provides professional case management services to Americans with chronic, life threatening and debilitating illnesses.

PAF case managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis also assisted by doctors and healthcare attorneys.

Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Helpful Education Resources

The Individualized Education Program (IEP) IS THE KEY
Children’s Craniofacial Association 2011 Symposium Presenter: Paula Guzzo
click here to download 

“Beyond the Face is a Heart” Skit
Peter uses a humorous skit to make his schoolmates feel comfortable to talk about his facial difference

Individualized Education Program (IEP) articles:
Understanding Article 7

Transition IEP Chart

Written Opinions: A How-To Manual

Parent Tip Sheet

First Day of School Letters

CCA board member Dede Dankelson uses these letters to introduce her son, Peter, to his classmates on the first day of school:
One letter is for the teacher,
Peter reads one and
one goes home with the classmates

ACPA’s To The Teacher of a Child with Cleft

Blogs & Self-Published Books

BLOGS

Beauty with a Twist

Diary of a Beautiful Disaster

How is Poodle

More Skees Please 

Our Altered Life

BOOKS

A Closer Look
By Carmen Anita Mickley
“Will you take a closer look?” Everyone wants and deserves to be loved for who they are, not judged for how they look. This heartfelt poem, written by a mother, encourages others to look beyond the visible differences and find the person inside. Illustrated with candid photos of children and adults with facial differences, “A Closer Look,” shows the person beyond the diagnosis. “A Closer Look” can change a mind, a changed mind can change a heart, a changed heart can change a life.

My Life Story with Apert Syndrome
By Christine Clinton
Christine Clinton resides in Toms River, New Jersey. She graduated with a Bachelor of Arts degree from Kean University, and is volunteers at a local hospital. She decided that she would like to inspire others by sharing her life story and all of the achievements she accomplished. Although she was diagnosed with Apert Syndrome, she never allowed anything she strived for become just a dream. She hopes to deliver her message so others will become inspired to achieve anything they hope for in life as well.

General Information and Support

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.

Parents Helping Parents, Inc.
Professional and parent education and training on how to begin and maintain a parent support network.

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.

Operation Respect
Operation Respect transforms schools, camps, and other youth-serving organizations into safer, more respectful, bully-free environments for children and youth through our social-emotional learning curriculum, professional training, and inspiring music. We provide adults the tools they need to help children and youth express their feelings constructively, resolve conflict peacefully, celebrate diversity, and engage with each other in a spirit of caring, compassion and cooperation.

Family Voices
Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.