Amazon sells scores of books, cd's, and other things. I only found one book on Treacher
Collins Syndrome. However, I searched their database using the keywords "craniofacial"
or "cleft lip/palate" and came up with some relevant
results that might be
worthy of checking out. I have posted book recommendations that I've received
from my visitors. If you have any feedback on the books below, or if you
know any books other that should be posted below for people with TCS to read or for parents of
kids with TCS to read, please
let me know.
Book Recommendations:
| A highly recommended children's book! | A TCS parent's guide by Hope Charkins | Inspiration for parents of kids with disabilities | A great book telling kids that it's ok to be different | Distraction info and case studies with full color pictures | One letter is written by a girl with TCS! | Powerful story about one girl's struggle with bullying |
GENERAL TCS INFO:
Treacher
Collins Foundation
P.O. Box 683
Norwich, VT 05055-0683
Phone: 802-649-3050 or 1-800-TCF-2055
Executive Director: Hope Charkins, M.S.W.
Treacher
Collins-Franceschetti Syndrome - a very technical explanation of TCS
Plastic &
Craniofacial Surgery for Children - Treacher Collins Syndrome
Pediatric
Database - Treacher Collins Syndrome
Treacher Collins
Syndrome Q&A - an excellent source of info in an easy to understand format
Inherited Disease Genes
Identified by Positional Cloning - this page has a chart that has info about the
specific genes that cause certain diseases, TCS is among the diseases listed
PERSONAL PERSPECTIVES ON TCS:
Believing
in Belief - A
lifetime of living with Treacher Collins Syndrome from 1940 to the present...
Sharing experiences and coping methods about being different in day to day
living. A website by Jim Hill.
The Prince
Family Page
Tony's Treacher
Collins syndrome Page
CRANIOFACIAL INFO:
ChangingFaces.org
- a great site in England with wonderful
information...check out the resources page for some great books that they sell
Faces
National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
Phone: 800.332.2373
E-mail: faces@faces-cranio.org
Friendly Faces - an cool site for people with craniofacial disorders with a special slant on TCS
Children's Craniofacial
Association
Dallas Craniofacial Center at
Medical City Dallas Hospital
Facial
Anomalies/Craniofacial Conditions - a lot of good links to various organizations and
support groups
A Brave Face When You Look Different, Life Demands a Unique Kind of Courage - an article published in the Chicago Tribune
Kids Health - An article about dealing with social and emotional issues in kids with cleft lip and palate
March of Dimes - A nonprofit organization dedicated to eliminating birth defects
Center for Craniofacial Development and Disorders - by Johns Hopkins University
Hand Suction - a suction for trachs that is manual instead of electric...great for traveling with, so I'm told.
Small World Foundation - a non-profit organization that provides free reconstructive surgery for kids and adults in the USA and the world who do not have access to resources to have it done otherwise
SUPPORT:
YahooGroups
TCS Discussion Community - a wonderfully informative and supportive
discussion group. I highly recommend joining the group if you have TCS or
have family with TCS.
The Treacher Collins Family Support
Group
114 Vincent Road
Norwich
NR1 4HH
United Kingdom
Tel. & Fax +44 (0)1603 433736
E-mail:
neil@treachercollins.net
MUMS: National
Parent to Parent Network - A huge support group for a wide variety of disorders. They
have 18 children in their network with TCS.
National Parent to Parent Support and
Information System, Inc. -
P.O Box 907
Blue Ridge, GA 30513
1-800-651-1151 (for parents)
Fax: 1-706-632-8830
E-Mail: Judd103w@wonder.em.cdc.gov
"When Your Baby Has A Birth Defect" - an article
Tips That Bullies Don't Want Your Kids to Know - a cool website on how to deal with bullies
Don't Laugh At Me Project - A project designed to "establish a climate that reduces the emotional and physical cruelty some children inflict upon each other by behaviors such as ridicule, bullying and - in extreme cases - violence"
"Please Stop Laughing At Me" - Jodee Blanco's website with supportive information about dealing with bullying based on her own personal experiences with being bullied. Also, more info about her book written on the same subject.
Dealing with Pain - This website is all about pain control in both kids and adults. Among other things, it talks about how to talk to your kids about pain.
The Pain Experience - an article about kids and how they deal with pain
No Fears No Tears
- 2 videos about exploring pain control technologies for children
CLEFT PALATE INFO:
Cleftline.org
Children's Healthcare in Atlanta - Info about kids with cleft lip/palate
EAR/HEARING INFO:
Listen Up - great resource
for parents and kids with hearing loss
AMPHL - Association of Medical Professionals with Hearing Loss (wonderful resource if you're in the medical field)
DeafLawyers.org - "A resource for deaf and hard of hearing attorneys and law students"
Financial Aid for purchasing hearing aids
Eurion - waterproof hearing aids!
Rion - water resistant hearing aid
"Surgical Procedures of the External Ear Canal and Ear" - article published in 1993
Reconstructive Ear Surgery, Burt Brent, M.D.
American Academy of Audiology - This website can help answer hearing questions or help you find an audiologist
Audiology - an explanation of audiometry used to test hearing
Battery Life: Technical Issues and Answers - an article explaining about the battery life of a hearing aid battery
BONE ANCHORED HEARING AID (BAHA) INFO:
Entific - one company that makes the BAHA
"Binaural Application of the Bone Anchored Hearing Aid"
AIRWAY/JAW DISTRACTION INFO:
Trachey Kids - a website all about trachs
Distraction Osteogenesis Devices and Techniques
"Virtual Reality Expands UT-H Oral Surgery Capabilities" - a Texas Medical Center News article
"Craniofacial Distraction Osteogenesis"
Copyright © 2002 Amie Osborn. All rights Reserved
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