A. Batting for Battens Foundation, QLD
B. Bobby’s Books—Using Books to help Kids cope….
C. Behaviour & Management studies, USA
D. Isla Donegan's personal website
E. Ireland's Batten Disease website

Introduction

Below are the following links which could be helpfull.

Batting for Battens Foundation, QLD

*  The Batting for Battens Foundation is based in Queensland and provides relief to persons affected by Batten Disease and their families.  The Foundation does this by offering grants of money for specific needs or by paying for goods, services or facilities.  As well as distributing grants of money from the Foundation’s own resources received through fundraising and donations, they also use their influence and contacts by encouraging service providers to donate or discount goods and services to families. 
** There is no limit on the size of the grant being requested.  Whether the application is successful will depend on the financial resources of the foundation at the time and the possibility of successful applications to other bodies for part funding.  Feel free to submit the application and they’ll let you know. 
Please visit www.bfbf.org.au   for more details.

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Bobby’s Books—Using Books to help Kids cope….

*  “Bobby’s Books” helps children and their families cope with change, loss and grief…..   
 ** Bobby’s books is a growing program that has been piloted in early childhood classrooms, primary and highschools, hospice grief support programs, churches and other community agencies.  It seeks to improve the situations of children coping with loss by expanding the knowledge, skills and tools of those adults working with them.  There are a range of books in different categories and Educational Seminars. 
Please visit www.bobbysbooks.org   for more info.

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Behaviour & Management studies, USA

* The University of Rochester Medical Center (where Heather is based) has a website for their Batten center. The official title is the “Batten Disease Diagnostic and Clinical Research Center”.  The primary activities at present are focused on the CLN3 form of Batten Disease and involve: clinical care to patients in the U.S.A., clinical research with a rating scale developed to measure the course of physical disease progression over time, and development of a clinical trial. They do also see children with other genetic forms of Batten Disease, but JNCL has been the focus mainly because it is the most predominant type found in the States. The web link is below and is constantly being updated with more links, information, files, etc.
Visit  http://www.urmc.rochester.edu/neurology/Batten-disease-center/

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Isla Donegan's personal website

A special little girl from Australia NSW
Visit  http://isladonegan.com

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Ireland's Batten Disease website

Visit  www.beeforbattens.org

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