ALWAYS LIZA TO ME

Cecilia Rice writes a very personal, entertaining and engaging memoir of growing up with a severely disabled sibling.

“Liza is different. She can't talk. She can't walk properly. She's funny-looking and when she upsets people, which she almost always does, trying to bite or scratch them, we have to tell them it's not her fault; that she doesn't understand. Sometimes I don't understand either.”

To find out more about this amazing book and the author go to the Allen & Unwin website

Prof. Chris Oliver, together with a number of his colleagues at University of Birmingham have written a book for parents and carers to help towards an understanding of self-injurious behaviour when it is shown by a child or adult with Cornelia de Lange Syndrome. By writing this book they hope that parents and carers will become informed about the causes of self-injurious behaviour and active contributors to the assessment and treatment process.

Download your copy of

A Guide for Parents and Carers
Self Injurious Behaviour in Cornelia de Lange Syndrome




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USA RESEARCHERS DISCOVER A 3RD GENE ASSOCIATED WITH CdLS

The CdLS research team at the Children’s Hospital of Philadelphia (CHoP) recently discovered a third gene involved in CdLS. Dr Meredith Wilson, Clinical Geneticist and Australian Representative, International CdLS Specialist Advisory Council gives an overview HERE

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MEDICAL INFORMATION ON LINE
For parents and caregivers of persons with CdLS, concerns often arise with regard to the well being of their loved one. Information is now on line which allows users to consult existing treatment protocols and other medical information produced by the Scientific Advisory Council SAC). For more information go to MEDICAL page.




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LOVE ELLA

Love Ella is a story written by our very own Madeleine Witham. This book tells a powerful and thought-provoking story of the journey from Ella's birthday, and the eleven years that follow. It is also a story of love and commitment and hardship and all its complexities.

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SCIENTIFIC ADVISORY COUNCIL and
FEDERATION COUNCIL MEETINGS
At Grosseto, the International Scientific Advisory Council met, as did the Council of the Federation of National CdLS Support Groups. Dr Levin, Chair of the SAC, reported that he had nearly filled all the positions on the SAC.
CONTINUED on International Conferences Page.




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DISCLAIMER:

This site is not intended for diagnostic purposes or self-treatment. The Cornelia de Lange Syndrome Association (Australasia) Inc. and its committee do not necessarily endorse or recommend any products, services, methods or literature mentioned within. Any questions about treatments should be discussed with your child's doctor.

The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA)
is a non-profit organisation which is run by volunteers, usually parents, who have a family member with CdLS.

Countries supported by CdLSA are Australia, New Zealand, Malaysia, Philippines, Singapore and other Pacific Nations. Australian families should contact either their State Co-Ordinator or Jenny Rollo (see Contact Us on left margin).

CLICK TO SUBSCRIBE TO OZNZ-CDLS

Any enquiries from families residing outside Australia should be directed to their country of origin. Click on the CdLS World icon above for contact information of all countries.

INTERNATIONAL CONFERENCES

25-29 July 2007
Niagara Falls, Canada