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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 Markova, Ph.D. Children from around
the world in their own words and handwriting tell us about random acts of
kindness. George, a 6th grader says, “To me a random act of
kindness means in your own special way doing something that makes the world a
better place. I think if everyone would commit themselves to doing a kind act
the world would run a little smoother.” 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 | |||||||||||||
