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We have
compiled the following list of resources for you. If you have a
resource you would like to add or have found an error contact us at: webmaster@ccakids.com resource categories: articles Anthropology and Craniofacial Anomalies information and support for a variety of conditions: American
Self-Help Group Clearinghouse A
detailed, constantly updated, subject-centered website and their annual Self-Help
Group Sourcebook make this one of our most valuable resources. The
clearinghouse and the book are clearly “Your Guide to Community and Online
Support Groups.” Ed Madara, Director, Cedar Knolls, NJ 973-326-6789 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 Betty
Mekdeci, Executive Director 407-895-0802 Parents
Helping Parents, Inc. Professional
and parent education and training on how to begin and maintain a parent
support network. 408-727-5775 E-mail:
general@php.com 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. 800-5-PARENT 253-565-2266
(Overseas, call collect) E-mail:
rfullerton@washingtonpave.com 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. 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 Columbia, SC 29202 E-mail: catndon@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. 800-352-9424 301-496-5751 TTY:
301-468-5981 www.ninds.nih.gov/disorders/bells/bells.htm CLEFT
LIP/PALATE Cleft
Advocate 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 702-769-9264 E-mail: debbie@cleftadvocate.org CRANIOSYNOSTOSIS For
a medical explanation of this syndrome, please see the Crouzon Support
Network’s web site at CROUZON
SYNDROME Crouzon
Support Network 425-672-1697 E-mail:
crouzons-owner@yahoogroups.com FREEMAN-SHELDON SYNDROME Freeman-Sheldon
Parent Support Group Joyce
Dolcour 801-364-7060 E-mail: fspsg@mail.burgoyne.com GOLDENHAR
SYNDROME Goldenhar
Syndrome Support Network Barb
Miles 9325
163 Street T5R
2P4 E-mail:
support@goldenharsyndrome.org MOEBIUS
SYNDROME Moebius
Syndrome Foundation Newsletters Annual
meetings Vicki
McCarrell, President 660-834-3406 E-mail: vmccarrell@mid-mo.net NAGER/MILLER SYNDROMES Foundation
for Nager and Miller Syndromes Newsletters,
meetings, etc. DeDe
Van Quill, Director 800-507-FNMS E-mail: ddfmns@aol.com NEUROFIBROMATOSIS Children’s
Tumor Foundation Ending
Neurofibromatosis through research. Newsletter Advocacy 212-344-6633 800-323-7938 E-mail: info@ctf.org Neurofibromatosis,
Inc. (NFI) Newsletter,
videos, meetings, etc. 301-918-4600 800-942-6825 E-mail: nfinfo@nfinc.org 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 E-mail: info@pierrerobin.org TREACHER
COLLINS SYNDROME Treacher
Collins Connection A
parent support and information network for families. PO Box 156 Boston, MA 02131 704-545-1921 E-mail: tom@tccconnection.org VASCULAR
BIRTHMARKS Sturge-Weber
Foundation An informative
resource from the foundation is Sturge-Weber Syndrome. Karen
Ball 800-627-5482 E-mail: swfoffice@sturge-weber.com Hemangioma
Hope A
prayer network. Cindy
Dougan North
East, PA 814-898-1054 E-mail: cdouganHH@aol.com www.members.tripod.com/~Michelle_GHHopeN.html Vascular
Birthmarks Foundation Newsletters,
meetings, etc. Linda
Shannon, Director 877-823-4646 AVM
Arteriovenous Malformation-FunnyFace Deborah
Breslow is a parent whose son has AVM, a difficult condition to diagnose and
treat. This book, with its lovely illustrations, tells the story of the
family’s medical and social adventures from a parent and child perspective.
We came away from the book with a clear understanding of the complexities of
parenting a child, with this facial anomaly and with an understanding of this
rare syndrome. We caution parents to read the book before they read it to
their child, due to details that may give unwanted stress to the child. We
welcome this informative booklet and Deborah as a resource. FunnyFace E-mail:
funnyfacestory@aol.com
VELO-CARDIO-FACIAL
SYNDROME Northeast
VCFS Support Group 603-898-6332 E-mail:
MLADJA@aol.com Velo-Cardio-Facial
Syndrome Educational Foundation 732-238-8803 866-823-7335 E-mail: info@vcfsef.org BOOKS,
VIDEOS, NEWSLETTERS, ETC. One
Step at a Time- The Journey Towards Healing During Your Child’s
Hospitalization There
is a new edition of this “unique journal, keepsake and guide for coping with
a child’s hospitalization.” Parents and professionals are praising this
200-page journal that includes helpful hints from other parents, tips from
nurses and other health care professionals, inspirational poems, quotes,
mediations, hospital terminology and protocols and guidance on navigating the
hospital experience. Good gift! Publisher:
Elton Wolf Publishing 888-858-3752 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. Woodbine
House 800-843-7323 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 Child
Health Alert A
monthly newsletter full of up-to-date pediatric health “alerts.” Product
recall is a regular column. Child Health Alert is edited by Allen M.
Mitchell, MD, and has a high-powered medical advisory board. Great new baby
gift. Paula
Mitchell, Publisher 781-239-1762 E-mail: alertsrus@attbi.com Children’s
Medical Ventures A
beautiful catalog of resources for giving premature babies as comforting a
life as possible. Products are developed by families and NICU caregivers!
Special nipples for feeding, educational booklets, sleeping aids and more are
all here. 800-766-8443 Children’s
Skin Disease Foundation CSDF
enhances its full educational services with camps on both coasts of the 925-947-3825 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. Operation
Respect 2
Penn Plaza, 5th Floor 212-904-5243 E-mail:
info@operationrespect.org Family
Voices- A National Coalition Speaking for Children with Special Health Care
Needs State
representatives, National Voice for Health Insurance, etc. A wealth of
information. Networking 2340
888-835-5669 505-872-4774 E-mail: kidshealth@familyvoices.org Go
Ahead and Stare A
beautifully written article in the July 2001 issue of Parents magazine (pg.
33-34, check your library). Jeanne McDermott, author of Babyface, A Story
of Heart and Bones, articulates her powerful parenting skills with her
son who was born with Apert syndrome. Your library will have a copy. I’m
Like You, You’re Like Me-A Child’s Book About Understanding and Celebrating
Each Other By Cindy
Gainer. This wonderfully illustrated book can only enrich all who read it.
Designed for preschool to grade three, the children are coached by the
comforting language and the colorful illustration to think about all the many
parts of our lives with each other. 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 612-338-2068 800-735-7323 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 Kids
Random Acts of Kindness Forward
by Rosalyn Carter, Introduction by Dawna Publisher:
Conari Press New
DVD from Moebius Syndrome Foundation The
Moebius Syndrome Foundation has a new educational DVD called “Learning About
Moebius Syndrome: Stories That Will Make You Smile.” Moebius
Syndrome Foundation 510-835-1318 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. 800-537-2237
( 888-348-0822
(National) E-mail:
pacer@pacer.org www.pacerkidsagainstbullying.org
Parenting
Challenges-A Survival Guide for Parents with Special Needs Children A
welcome, well-written article by Betsy Olds, whose son was born with Hemifacial
Microsomia. For a copy of the article, send a SASE to Forward Face. 212-684-5860 800-393-FACE Parent-to-Parent
training DVD just released! The 314-776-1300 www.dgckids.org
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.
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 612-338-2068 800-735-7323 Won’t
You Be My Kissaroo? 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 Harcourt,
Inc.
You Will Dream New Dreams
Inspiring Personal Stories by Parents of Children with Disabilities is a collection of over 60 short essays by "veteran" parents of children with disabilities who were asked to write the stories they wish they had heard when they received their child's diagnosis. http://www.disabilitiesbooks.com/ywdnd/index.html
Building Self-Esteem Through
the Museum of 1…25 Original Projects that Explore and Celebrate the Self By Linda R. Zack Free Spirit Publishing 612-338-2068 800-735-7323 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 317-274-2489 www.bradwoods.org Cultivating
Connections 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. 360-647-5120 E-mail: branchout@cultivatingconnections.com www.cultivatingconnections.com Elmer 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 Growing
Good Kids-28 Activities to Enhance Self-Awareness, Compassion and Leadership By
Deb Delisle, Jum Delisle. This K-5 book is full of fun creative activities
that promote self-awareness, tolerance, character development and service to
others. A good gift for your faith community or school! Free
Spirit Publishing 612-338-2068 800-735-7323 Homemade
Books to Help Kids Cope-An Easy-to-Learn Technique for Parents and
Professionals Magination
Press 800-374-2721 E-mail:
magination@apa.org I
Like Me By
Nancy Carlson. A story book. Good “going to the hospital” or birthday gift.
Ages 3-7 Publisher:
Puffin Books, 1988 Just
Because I Am By
Lauren M. Payne. From this book and leader’s guide, young children can learn
that they are special “not because of things I do, not because of what I look
like, not because what I have…just because I am.” Free
Spirit Publishing 612-338-2068 800-735-7323 The
Kid’s Guide to Service Projects-Over 500 Service Ideas for Young People Who
Want to Make A Difference By
Barbara A. Lewis. For Ages 10 and up, this classic book covers just about any
subject a child might have an interest in and guides them to taking action.
Good teacher gift. Free
Spirit Publishing 612-338-2068 800-735-7323 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. Magination
Press 800-374-2721 E-mail:
magination@apa.org Real
Kids Taking the Right Risks-Plus How You Can, Too! By
Arlene Erlbach. Twenty-one teens are pictured with their interesting, short
personal stories of the risks they have taken. All aspects positive and
negative of risk taking are mapped out for ages 10-15. We think all ages can
learn something from this book. Free
Spirit Publishing 612-338-2068 800-735-7323 Sam,
The Boy Behind the Mask By
Tom Hallman Jr. Pulitzer Prize winner Hallman tells the life story of Sam,
now a teenager, from Publisher:
G.P. Putnam & Sons When
I Feel Afraid By
Cheri J. Meiners. We welcome this lovely book, for ages 4-8, that helps
children understand their fears (both real and imagined) and teaches basic
coping skills. We think the adult section called “Supporting Children When
They Feel Afraid” should be required reading for all of us working or living
with children Good gift. Free
Spirit Publishing 612-338-2068 800-735-7323 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
Chicken Soup for the Teenage Soul I
and II ISBN 1-55874-468-1 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 612-338-2068 800-735-7323 Life
Strategies for Teens 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 When
Your Teenager is Injured-Preparing for Work and Adulthood Another
favorite! Las
and Associates Publishing/Training Marilyn
Lash 919-562-0015 E-mail: information@lapublishing.com Best I Can Be Many delightful songs that are
written and sung just for children in the hospital and just home from the
hospital. Hugworks 817-268-0020 E-mail:
hugworks@hugworks.org A
Child in Pain, How to Help, What to Do Publisher:
Hartley & Family
Communications Tops!
From the producers of Mister Rogers’ Neighborhood, their products include books,
videos, CDs, games and toys for children. Write for a catalogue 412-687-2990,
ext. 237 The
Kids Books of Questions I and II 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 Suite
A 909-925-8800 888-463-3543 The
Meanest Thing to Say 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 Publisher:
Scholastic, Inc. Little Bill Books for Beginning Readers Teasing
and How to Stop It This
video and manual teach the child being teased to deal with any teaser. Parents
and teachers are raving about its down to earth ability to change lives! Family
Resource Library BC
Children’s Hospital Vancouver,
BC V6H 3V4 (Canada) 800-331-1533,
ext. 2 (toll free in 604-875-2345,
ext. 5102 E-mail:
famreslib@cw.bc.ca Job Search Handbook for People
with Disabilities 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: Peter
Alsop 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! Topanga, CA 90290 800-676-5480 E-mail: peter@peteralsop.com David
Roche A
spokesperson for all with facial differences! For a video to preview his
message or come to your own community, contact David Roche at: 415-381-3518 E-mail: daveroche@aol.com Easy-to-Swallow,
Easy-to-Chew Cookbook Understanding
swallowing is a complex subject and the authors give us 50 pages of easy to
understand education on the subject! We welcome this important resource with
over 150 recipes. At book stores. John
Wiley and Sons, 2002 Facing
Facial Surgery? Cut Out the Caffeine When
facing surgery where normal eating will be interrupted, give yourself or your
child a smoother recovery by stopping caffeine at least a week before the
surgery. This means coffee, chocolate, caffeine-laden soft drinks, etc., Many
patients struggle with the added effects of withdrawal: a mean headache,
irritability, and drowsiness. Having these symptoms is much better the week
before surgery than during the days after. Betsy
Wilson, Director Let’s
Face It
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. (www.cleftline.org)
For
a complimentary copy, please contact us by phone or e-mail.
Zip-N-Squeeze Patients,
parents, and professionals are raving about this simple inexpensive eating
device. This invention can revolutionize the care of jaw and oral surgery
patients, old and young. The
June 2004 edition of Today’s Dietitian (pg. 38-41; By Kate Jackson)
has an in depth article about Zip-N-Squeeze titled: Ensuring Adequate
Nutrition After Jaw Surgery. Your public library should have a copy of
this magazine or they can get you one. Susan
Beaudette, R.N. Yorba Linda, CA 92885-0575 714-997-7146 E-mail: zipnsqueeze@earthlink.net Soft-Sipp
Bottles The
Soft-Sipp leak-proof Squeezable Feeder is designed to replace awkward syringe
feeding, enhancing liquid nutrition for infants & toddlers after surgery.
The exclusive design includes an easy-to-handle collapsible bottle and an
ultra soft tip. Simply squeeze to deliver important nutrients without the
risk of injury to newly sutured areas of the face and mouth. This bottle
promotes comfort for both patients and care-giver, helping to reduce stress
and make post-op feeding a positive experience. 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 916-722-8168 E-mail:
aaa@anaplastology.org
Custom Prosthetic Designs, Inc.
email: cpdrbarron@prosthesis.com website: www.prosthesis.com
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