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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).


UPDATES/CORRECTIONS


OCTOBER 2005

We dedicated our 2005/2006 Resource Guide to the following two resources:

Happiness is a Storm, Facing Illness and Embracing Life as a Healthy Survivor
By Wendy Schlessel Harpham, MD. This seventh book by cancer survivor, Wendy Harpham, could be called “Let’s Face It.” With wit, wisdom, and questions she gently moves us to “Embrace Life as a Healthy Survivor.” Patients and professionals are singing the praises of this book. Famous author, Rachel Naomi Remen, MD, has called this book “a blessing.” We agree. Available at your book store. Here is a quote from page 92 in the chapter titled, “The Role of Knowledge:”

“From the time of diagnosis on, knowledge can help you let go of worry and focus on living.”

Also see Books by Dr. Wendy Harpham.

The Little Elephant with the Big Earache
By Charlotte Cowan, MD, Illustrated by Elaine Garvin. Pediatrician Charlotte Cowan’s new series of family health books are winners! The Hippocratic Press is devoted to helping children and their caregivers become first class health consumers. Earaches account for over 24.5 million office visits a year in the US! We find this new book about earaches both educational and comforting. Other books in this series are Peeper has a Fever (Peeper is a frog) and Katie Caught a Cold (Katie is a polar bear). These books will be welcome additions to hospital play rooms, day care centers, preschools, pediatric waiting rooms or to read at bedtime the day of an earache, fever, etc. The series had hardback books for young children and paperback books for adults. For details, see their web site. Child Life Specialists take note!

Publisher: The Hippocratic Press
Web: http://www.hippocraticpress.com

APRIL 2005

The following resources were recently featured in our Spring Update.

Let’s Talk About Race
By Julius Lester and illustrated by Karen Barbour. This creative, beautiful new children’s book will help to educate the world to “value the person behind every face.” Julius Lester leads us into an exercise where we feel the bones under our eyes and then go and feel the same bones in others. “Beneath everyone’s skin are the same hard bones.” A wonderful present for young and old. This would be an excellent book to spark important, fun conversation about differences. Available at your book store.

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

NOVA — National Organization of Vascular Anomalies
For 10 years this support network (formally Hemangioma Newsline) has been working with adults and children around the issues of living with hemangiomas and vascular malformations.

P.O. Box 0358, Findlay, OH 45839-0358
Phone: (419) 425-1593
E-mail: hemangnews@msn.com
Web: http://www.novanews.org

Spirituality and Health Magazine
Their April 2005 issue has an article titled, “Play That Lightens the Load of Children In Hospitals.” All of us who have had children in hospitals know about the healing value of play and this article is about a research project measuring the positive effect of a story telling program for hospitalized children. Child Life Specialist take note!

New Parents Guide for Head Injury
Lash Associates has published a new booklet titled, Children With Traumatic Brain Injury: A Parents Guide. To keep up with their superior professional and family resources, sign up for their electronic newsletter, What’s New at Lash and Associates Publishing/Training, Inc. There is a 2005 edition of the Lash Associates manual, Signs and Strategies for Educating Students with Brain Injuries.

708 Young Forest Dr., Wake Forest, NC 27587-9040
Phone: (919) 562-0015
Web: http://www.lapublishing.com

Learning to Live with Grief
By John R. Claypool. This 23-page booklet can give hope and support to all who are moving through a grief process. Printed by the independent Episcopal press, Forward Movement. ($0.75 per copy)

Phone: (888) 543-1813
Web: http://www.forwardmovement.org

Picture Me Foundation
Picture Me is dedicated to getting children with disabilities or serious illness to use “therapeutic scrapbooking.” Taking pictures, creating, writing, and sharing are just four of the components of the Picture Me program. They have resources with guidelines to get you started and free trainings!

P.O. Box 634, Litchfield Park, AZ 85340
Phone: (602) 316-1221
E-mail: kindy@pictureme.org
Web: http://www.pictureme.org

Locks of Love
This non-profit organization is dedicated to providing custom-made, real hair pieces to children under 18 who are dealing with medical hair loss. There must be a financial need. There are approximately 2 million children in the U.S. who have some form of Alopecia Areata and many more who have total hair loss because of burns and other diseases. They accept donations of hair (10 or more inches) and funds!

Susan Stone, Director
2925 10th Ave. North, Ste. 102
Lake Worth, FL 33461-3003
Phone: (888) 896-1588 or (561) 963-1677
Web: http://www.locksoflove.org

Joel
By Joel Sonnenberg. Joel was badly burned in an auto accident wen he was a toddler. This new, welcome hardcover book is Joel telling us his story. We are invited into the clever, and sometimes very difficult, ways Joel worked out his life as a child and teen. Our reviewers thought this book would be useful for any teen dealing with being “different.” We agree and also think it would make a fine resource for any disability awareness education program. At your book store.

One Step at a Time - The Journey Toward Healing During Your Child’s Hospitalization
There is a the 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, meditations, hospital terminology and protocols, and guidance on navigating the hospital experience.

Phone: (888) 858-3752
Web: http://www.journeytowardhealing.com

SNAP — Special Needs Advocacy For Parents
SNAP, a non-profit parent network, has launched a Medical Insurance program dedicated to ”help you understand your policy and problem-solve your insurance nightmares.” West and East Coast offices (see their web site for more information).

(888) 310-9889
Web: http://www.snapinfo.org


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