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Spinal Cord Injury Web site

Information on spinal cord injuries can be obtained from the Spinal Cord Injury (SCI) Information Network's Web site at This Web site provides information and links to hundreds of national SCI resources. In addition, the site features a guest book for posting messages, a chat room for on-line discussions, and a listing of frequently asked questions on SCIs. For further information, contact: Linda Lindsey, Information Manager, (205) 934-3282; or e-mail:

Craniofacial Support Network

The Craniofacial Support Network of Southern California is a network dedicated to empowering parents of children born with facial birth defects. The Network, founded in 1996, has been successful in building community among families of children who have facial birth defects. Based in Los Angeles, the network hosts monthly group meetings and events; has translators available for families that speak Spanish only; and offers in-hospital and home visits to families of newborns with facial differences. In addition to serving the craniofacial community of Southern California, the Craniofacial Support Network also responds to information and networking requests from families and professionals nationwide. Inquiries out of the Southern California area should be e-mailed to For local inquiries, call (818) 754-4600 or e-mail.

Birth defects of the face and ear studied

The Association of Birth Defect Children, Inc. (ABDC), and the University of Texas Southwestern Medical Center at Dallas are collaborating on a scientific study to uncover the possible causes of certain birth defects of the face and ear, such as Goldenhar syndrome. They are seeking children who have Goldenhar syndrome (including OAV or hemi-facial microsomia) born since July 1991, and who have a parent who served in the U.S. military in any capacity in 1990 or 1991. Families who are interested in obtaining information about the study can contact ABDC by e-mail:; Web site:; or by telephone: (407) 245-7035.

November is National Family Caregivers Month

In tribute to the more than 25 million Americans who provide daily care for their family member(s) with a disability or chronic illness, The National Family Caregivers Association (NFCA) announces its annual celebration in support of family caregivers. The goal of this year's theme, Share the Caring, is to:

* honor and thank family caregivers for their tremendous contributions to their loved ones and to society;

* expand and enhance local services and assistance available to family caregivers;

* raise public awareness about caregiving issues; and

* begin to effect change in the way society treats family caregivers. For ideas on how to celebrate NFC Month in your community, contact the NFCA at (800) 896-3650, or on their Web site:

"10 Fingers, 10 Toes, 10 Years" event a memorable one

On July 12, 1999, Sigma-Tau Pharmaceuticals celebrated its tenth anniversary at its Gaithersburg, Maryland headquarters. The day's festivities were designed to say "thanks" to the company's most important constituents: children with disabilities and their families, researchers and physicians, dedicated employees, associations' representatives and neighbors from the local community. In an effort to raise awareness for metabolic disorders as well as the importance of partnerships in healthcare, part of the event was the creation of the world's largest finger painting.

The 28'x36' finger painting masterpiece (upper right), was created with the help of more than 200 children from local communities and across the country, and the Special Olympics, who attended the company's anniversary celebration picnic.

The more than 500 people who attended enjoyed live entertainment and games, walk-around costumed characters, and an educational health fair. Among the associations present at the gathering were the National Parent Network on Disabilities, Make-A-Wish Foundation, Special Olympics, the National Organization for Rare Disorders, and EXCEPTIONAL PARENT magazine.
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Publication:The Exceptional Parent
Date:Oct 1, 1999
Previous Article:New for 2000.

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