NEWS AND UPDATES

This page contains the most recent updates, newest resources added to our site, and address changes. Please check back often!.

NEWS

Genetic Alliance
The Genetic Alliance has launched the first stage of Disease InfoSearch - an innovative public information search tool for genetic disease information that can be viewed at http://www.geneticalliance.org/DIS/. The Genetic Alliance developed this Internet-based search tool to facilitate public access to quality lay-oriented information about genetic and rare diseases in language that is understandable and useful. 

The American Cleft Palate - Craniofacial Association (ACPA) and the Cleft Plate Foundation (CPF)
The American Cleft Palate - Craniofacial Association and the Cleft Palate Foundation have a listing of cleft palate and craniofacial teams by geographical region. This is a very useful, which can aid you in finding a team near you. After you have read the introduction to the teams listing at http://www.cleftline.org/teamcare/listingsIntro.htm, you will be prompted to click a link stating you have read the introduction and understand its contents. You will then be directed to a page which has cleft palate and craniofacial teams broken down by geographical region. If you need help, call the Cleft Line at (800) 24-CLEFT (EST).

CONFERENCES

UPDATES/CORRECTIONS

OCTOBER 2004

Sjogren's Syndrome Foundation - address change

8120 Woodmont Ave., Ste. 530,
Bethesda, MD 20814
(301) 718-0300 or (800) 475-6473
E-mail: SSF@sjogrens.org
Web: http://www.sjogrens.org

National Birth Defects Registry
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 Tennesee town do not drink the poisoned well water! They are dedicated to gathering information and are collaborating with medical communities, governments and national health organizations all over the world.

Betty Mekdeci, Executive Director
Birth Defect Research for Children, Inc.
930 Woodcock Rd., Ste. 225
Orlando, FL 32803
(407) 895-0802
Web: http://www.birthdefects.org

ANA/NJ - Acoustic Neuroma Association of New Jersey

Web: http://www.ananj.org

APRIL 2004

Disability Etiquette - Correction

(800) 444-0120
Web: http://www.epva.org

Signing Time (Video Series)
Signing Time is a top notch video series that has two dear children teaching basic sign language to infants and children of all ages. Creative, fun, and educational. Makes a great gift. Child Life Departments take note. A CD is also available.

Two Little Hands Productions
P.O. Box 581037, Salt Lake City, UT 84158
(801) 533-0444
Web: http://www.signingtime.com

Resilience For Teens: Got Bounce!
Download this free, first class resource designed to help teens through tough times. Created by the American Psychological Association, it can be useful for all of us.

Web: http://www.apahelpcenter.org/

If Peace Is...
By Jane Baskwill. This is a beautifully illustrated book that introduces different meanings for the word "peace." An example is, "It's a hand waved in friendship, a simile on a face... a kind word and deed, any time any place. Peace is a promise - It is something we do." Good gift!

Mondo Publishing, NY

Bullying and the Young Child
(From the January 2004 issue of Child Health Alert) By Mary Eames Ucci. Ms. Ucci's regular column in Child Health Alert is one of our favorites. In this well written article, Ms. Ucci answers questions such as: How do preschool children experience bullying? Is bullying common among young children? What is the effect on young children? and What can adults do to help? Give a copy of this article to your preschool or day care provider!

Web: http://www.childhealthalert.com/

MARCH 2004

Lane's Road Home (video)/Helping Children Heal the Effects of Loss and Trauma After Burn Injury, A guide for parents and caregivers (booklet)
By Megan Bronson RN, MSN,CS. These companion resources are excellent! The 12-minute film follows six-year-old Lane through her recovery from a burn that covered 85% of her body. It is an honest, hopeful, well-documented video. One of the highlights for me was Lane's father saying how important it was to ask for help and how hard that was for him to do. The booklet is well-written and is exactly what it says it is: "a guide for parents and caregivers". This film can be a powerful tool for any Health Education program and the booklet should be required reading for all who are dealing with ill children. (Review by Betsy Wilson MS, Child Life Specialist, Director, Let's Face It USA)

See Phoenix Society for contact and ordering information.

JANUARY 2004

Birthmark Web Site
Birthmark.us is a new web-site aimed at provided detailed information on various birthmarks, including hemangiomas, vascular malformations and complex vascular syndromes, as well as diagnostic and treatment strategies. This site should be very helpful to professionals and families. The complexity of treatments and access information to medical centers is all clearly presented.

Web: http://www.birthmarks.us