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.
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.
Available for $12 (including shipping and handling) by contacting CCA via email or by calling 800.535.3643.
Read 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?
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.
Betty Mekdeci, Executive Director
930 Woodcock Rd., Ste. 225
Orlando, FL 32803
Parents Helping Parents, Inc.
Professional and parent education and training on how to begin and maintain a parent support network.
3041 Olcott Street
Santa Clara, CA 95054
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 Street
Tacoma, WA 98465
253-565-2266 (Overseas, call collect)
Brothers and Sisters-A Special Part of Exceptional Families
An important book by Thomas Powell and Peggy Ahrenhold Gallager.
Publisher: Paul H. Brookes Publishing Co.
The Don’t Laugh at Me Project (DLAM)
The Don’t Laugh at Me Project is dedicated to transforming our communities into compassionate, safe, and respective environments for children. Founded by Peter Yarrow of Peter, Paul, and Mary, the curriculums are creatively designed for year-round social and emotional learning (SEL) and character education. Thanks to the generosity of their supporters, Operation Respect distributes the DLAM programs free of charge. Congress has recently endorsed this program by declaring it a national resource for combating teasing.
2 Penn Plaza, 5th Floor
New York, NY 10121
Family Voices is a national coalition speaking for children with special healthcare needs. You’ll find a wealth of information on various subjects.
2340 Alamo Southeast, Suite 102
Albuquerque, NM 87106
Information and Support for Specific Conditions
Apert Web Page
A delightful full-service web page maintained by Don and Cathy Sears
Don & Cathie Sears
PO Box 2571
Columbia, SC 29202
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.
PO Box 5801
Bethesda, MD 20824
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.”
Family to Family networking, articles, etc.
PO Box 751112
Las Vegas, NV 89136-1112
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. http://www.cleftline.org/parents-individuals/feeding-your-baby/
Coffee Talk For Parents/Caregivers of a Child with Cleft Lip and Palate
Oregon Health & Science University, Portland, OR
Our parents share personal experiences, support and encourage others.
Where: Doernbecher Children's Hospital, Conference Room 08411 (next to waiting room)
When: Every Monday at 12 noon. Drop in anytime.
Coffee and light snacks provided. Free to attend
Question, please contact: Dr. Mina Nguyen - firstname.lastname@example.org or 503-494-1093
Moebius Syndrome Foundation
Vicki McCarrell, President
PO Box 147
Pilot Grove, MO 65276
Foundation for Nager and Miller Syndromes
Newsletters, meetings, etc.
DeDe Van Quill, Director
13210 SE 342nd Street
Auburn, WA 98092
Children’s Tumor Foundation
Ending Neurofibromatosis through research.
95 Pine Street, 16th Floor
New York, NY 10005
Neurofibromatosis, Inc. (NFI)
Newsletter, videos, meetings, etc.
PO Box 18246
Minneapolis, MN 55418
PIERRE ROBIN SEQUENCE
Pierre Robin Network
An information group for families affected by Pierre Robin Sequence and professionals who are interested in PRS.
PO Box 3274
Quincy, IL 62305
An informative resource from the foundation is Sturge-Weber Syndrome.
PO Box 418
Mount Freedom, NJ 07970
A prayer network.
North East, PA
Vascular Birthmarks Foundation
Newsletters, meetings, etc.
Linda Shannon, Director
PO Box 106
Latham, NY 12110
Northeast VCFS Support Group
2 Lansing Drive
Salem, NH 03079
Velo-Cardio-Facial Syndrome Educational Foundation
PO Box 874
Milltown, NJ 08850
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.
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.
712 Bancroft Road, #511
Walnut Creek, CA 94598
Books, Videos, Newsletters, etc.
Babyface, A Story of Heart and Bones
Now in paperback! By Jeanne McDermot- This is an exquisite book. The story of Ms. McDermot’s second son who was born Apert syndrome.
Your trusted source for books on disabilities
A Closer Look
Authored 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.
ISBN/EAN13:1466355220 / 9781466355224
A Leaders Guide to I’m Like You, You’re Like Me has 20 lessons that reinforce the message of the child’s book. ISBN 1-915793-61-X
Free Spirit Publishing
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.” For more of Todd Parr’s children’s books that deal with emotions and social life, see his web site at:
Pubisher: Little Brown
Reflections from a Different Journey
Stanley D. Klein Ph D. and John Kemp
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.
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.
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
By Joanne Ryder and Melissa Sweet. This hardback book for ages 3-5 is beautifully illustrated. In rhyme we are introduced to many different kisses. One of our favorites is, “A goodbye kiss goes with a hug to keep you safe and feeling snug.”
Publisher: Gulliver Books
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
Proud of Our Feelings
Beautiful watercolor illustrations and text to help children and caregivers discover, have fun, and be proud of their feelings. Good gift.
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
You Are Special
By Max Lucado. Thanks to the Mayo Clinics’ Paula Freitag for suggesting that we add this resource. Paula read this hardcover book to a teenage patient who was dealing with a brain tumor. After hearing the story, the teenager said, “That is a story about real life.”
Publisher: Crossway Books, 1997
By Bill Cosby
Thank you Bill Cosby for this paperback that teaches a specific skill to help children ages 6-10 to deflate the power of a bully. Included is a letter to parents written by Harvard Medical School’s Professor Alvin F. Foussiant, MD.
Publisher: Scholastic, Inc. Little Bill Books for Beginning Readers
Pacer Center Launches National Bullying Prevention Web Site
Designed for 2nd-6th grade, children can go through Pacer’s new web site to learn what bullying is, how to respond to it, and how to prevent it. Twelve animated characters teach through games, videos starring celebrities, real kids, artwork, etc., Children with disabilities are included. We urge you to check this one out and bring it to your community.
8161 Normdale Blvd.
Minneapolis, MN 55437-1044
800-537-2237 (Minnesota only)
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.
by R.J. Polacio
Several years ago R.J. Palacio had a life-altering experience when she had a very brief encounter with a craniofacial child at an ice cream parlor. The negative reaction of her young sons to seeing someone different left a permanent impression. Ms. Palacio spent years, both consciously and subconsciously, thinking about this incident and putting herself in the shoes of the child with a facial difference. I believe this is why her debut novel, Wonder, gives such an insightful perspective of what it really feels like to not only be a 10-year old boy with an extreme facial difference who is entering a new school, but to also be the parent, the sibling, or the friend of someone who looks different. This book is inspiring students across the nation to “Choose Kind.” A must read for ages 9 to 13 and beyond.
Dealing with bullies
Free Spirit’s Mission
Everyday life presents many challenges for kids, from home to school to the wider world. No matter how many choices, changes, and opportunities young people face, Free Spirit has had the same mission for over 29 years: to provide children and teens—and the adults who care for and about them—with the tools they need to succeed in life and to make a positive difference in the world.
Based in Minneapolis, Minnesota, Free Spirit Publishing is known for its unique understanding of what kids want (and need) to navigate life successfully. Our reputation as the leading publisher of Self-Help for Kids® and Self-Help for Teens® is grounded in books and other learning materials that are practical, positive, pro-kid, and solution focused. We’re not afraid to tackle tough topics such as teen depression, kids and anxiety, grief and loss, juvenile justice, and conflict resolution. Free Spirit also offers sound advice with a sense of humor on relevant issues including stress management, character building, puberty, school success, self-esteem, service learning, and more. We aim to meet all kids—toddlers, teens, and in-betweens—where they are (not where we wish they were), and support them to develop their talents, build resiliency, and foster a positive outlook on life so they can reach their goals. In early 2007, Free Spirit formed an Advisory Board of Educators, a diverse group of K–12 teachers, counselors, librarians, administrators, and social workers who provide us with valuable feedback about our products. In early 2008, Free Spirit added the Teen Advisory Council, whose members contribute opinions on design, art, and content. With the boards’ input, our books stay current, credible, and extra beneficial for children, teens, and adults.
Enter a search word (i.e. self esteem, bullying) to find literature and learning materials on a variety of topics
Free Spirit Publishing
Homemade Books to Help Kids Cope-An Easy-to-Learn Technique for Parents and Professionals
School counselor Molly Foot is truly cultivating connections with adults and children with her game Branch Out. Deep appreciation of self and others comes each time this clever, active game is played with 2 to 35 players! School counselors, scouts, faith communities, etc…, are singing the praises of this new resource. Be sure to see the video of the game being played on their web site.
907 Harris Avenue
Bellingham, WA 98225
By Jack Canfield and Mark Victor Hansen
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 really change lives.
Free Spirit Publishing
By Jay McGraw
TV host Dr. Phil’s son Jay is the author of several books for teens that come with an audio tape or CD. Fun, powerful tools for helping teens with skills for life. Jay travels and has powerful school programs. NY Times Best Seller List
Dealing with Bullying
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. It has been inspired by Judy Blume and offers a harrowing but inspirational insight into a condition that is mostly unheard of.
Best I Can Be
Many delightful songs that are written and sung just for children in the hospital and just home from the hospital.
752 Mary Drive
Hurst, TX 76053
By Leora Kuttner, Ph.D.
This book provides specific language that will help children manage the full spectrum of the pain experience, both on a sensory and an emotional level.
I Like Me
By Nancy Carlson. A story book. Good “going to the hospital” or birthday gift. Ages 3-7
Publisher: Puffin Books, 1988
Written by Gregory Stock, Ph.D. Good for long car rides and fun for a hospital stay.
Publisher: Workman Publishing
Medi-Kid Pediatric Arm 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. Parents are delighted!
448 S Palm
Hemet, CA 92543
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.
Toy catalog for children with special needs
Camps and Retreats
Camps for Children Living with Facial Difference
We urge parents to find or create camp experiences for children of all ages. Camp About Face in Indiana not only has a craniofacial camp in July but has added a Leadership Academy. At the end of the Academy, one outstanding camper who will be attending college or a trade school in the fall will be eligible for a scholarship of $2,000. For camp and Academy information call the Craniofacial program office at Riley Hospital for Children in Indianapolis.
By Dr. Daniel J. Ryan
Many of us with facial disfigurement benefit from coaching when it comes to finding a job. This 251 page book is full of tasks that can propel us into our chosen field of work. Chapter 12 is about “Keeping the Job” and offers tips on things like “Succeeding at Office Politics.” This book requires hard work. We think you will be rewarded with important information about yourself and job satisfaction. Available at your Book Store.
Entertainers Who Inspire and Enrich
Through concerts, workshops, tapes, CDs, films, song books, etc., Peter Alsop’s serious messages about family strife, self love, and respect of others are presented with humor and fun. One CD is for young children and has songs such as: I Need a Hug, My Dad’s a Jungle Gym and Poop goes the Weasel!
Moose School Records
PO Box 960
Topanga, CA 90290
A spokesperson for all with facial differences! For a video to preview his message or come to your own community, contact David Roche at:
191 Throckmorton Avenue, #1B
Mill Valley, CA 94941
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.
Insurance Help and Resources
Book to help families with insurance issues, by Laurie Todd
American Anaplastology Association
The American Anaplastology Association is a nonprofit, interdisciplinary organization dedicated to promoting the art and science of prosthetic therapy for patients with facial or somato differences due to cancer, trauma, or congenital origin.
MaryAnne Bobrow, Executive Director
6060 Sunrise Vista Drive
Citrus Heights, CA 95610-7098
Custom Prosthetic Designs, Inc.
Robert R. Barron
Certified Clinical Anaplastologist
Specializing in Prosthetic Replacement of Facial and Digital Anatomy
20608 Gordon Park Square Suite # 150
Ashburn, Virgina 20147
Genesis Prosthetic Arts
David Van Aukler
Genesis Prosthetic Arts
2106 Musson Road
Howell, MI 48855
FAX # (517) 540-6191
Helpful Education Resources
Children’s Craniofacial Association 2011 Symposium Presenter: Paula Guzzo Parent & CCA Board Chair
click here to download (http://ccakids.org/articles/THE%20IEP%20IS%20THE%20KEY.pdf)
"Beyond the Face is a Heart" Skit
Peter uses a humorous skit to make his schoolmates feel comfortable to talk about his facial difference
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.
13140 Coit Road • Suite 517 • Dallas, TX 75240 | Toll-free 800.535.3643 • Phone 214.570.9099 • Fax 214.570.8811 | Email contactCCA@ccakids.com
Children's Craniofacial Association
is a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas. CCA's mission is to empower and give hope to individuals and families affected by facial differences. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.
© 2013 Children's Craniofacial Association