The Australian Chapter of BDSRA

1Batten Disease: An Easy to Understand Guide - L W Johnston, et. Al.

This book is written in layman’s language and covers Batten Disease, what it is, how it is diagnosed, how it is inherited, how it affects an individual, and about BDSRA – 50 pages.

2.  Coping for Careproviders -           Elise E. Labbe, Ph.D.

This book looks at the affects of Batten Disease on the family and how it can wear down the primary careproviders, i.e. Mum and Dad, and the importance of developing good coping skills – 25 pages.

3. Teach and Be taught; A Guide to Teaching Students with Batten Disease

(rev 2002) -    Wendy Bills, M.Ed., et. Al.

A practical information book for parents and teachers that addresses the issues of having a child with Batten Disease in school.  Includes sections on Individualised Education Program (IEP), alternative communication, vision, social interactions, therapy, law, etc. – 60 pages.

4.  Therapy and Teaching with Batten Disease -

A data source based on survey research with Australian participants.  Investigates similiarities of care, strategies used by parents, teachers and therapists.    Compiled by BDSRA Australian Chapter

5.  Batten Disease and Schooling in Australia -

A support resource for teachers and parents: Entering the school system and information for Educators, Parents & School Administrators.     Kelvin Shem (B.Ed) & BDSRA Australian Chapter

6.  Will You Walk With Us? – Batten Disease and Hospice Care **            L W Johnston, et. Al.

A book that is designed for Hospice workers to quickly give them an understanding of Batten Disease and what is happening including end stages, its affect on the family and that the parents are professionals – 20 pages.

7.  Fundraising Ideas for Working Toward a Cure  -                   L Houghtby & S Killebrew-Ross

A simple book that presents several ideas for fund-raising events.  It is designed that when someone selects a fundraising event, someone from the BDSRA who has had a success with that event will help with the practical side of it and act as a guide. – 8 pages.

8.  Handy Helpful Hints for Careproviders -        Robert Wilhelm, et. Al.

A compilation of ideas from parents and other careproviders for caring for a child/ren with Batten Disease. –  12 pages

9.  Batten Disease; Insights for Parents -                L W Johnston, et. Al.

This book is a companion to “Batten Disease; An Easy to Understand Guide.”  It is for parents of children with Batten Disease and deals with the questions and issues that parents want to know. – 30 pages

10.  Gastrointestinal System - ** Nancy Carney, RN – BDSRA RN Medical Liaison/Educator

About the Gastrointestinal system, how it works from the lips through the end, how it is affected by Batten Disease.  Chapters on nutrition, feeding techniques, feeding devices and problem solving. – 175 pages

11.  Pressure Sores -  **              Nancy Carney, RN – BDSRA RN Medical Liaison/Educator

What is a pressure sore, causes, how to prevent and how to treat. – 32 pages.

12.  Dental Issues & Mouth Care - Nancy Carney, RN – BDSRA RN Medical Liaison/Educator

What to look for, causes and suggested procedures. – 62 pages

13.  Physical Therapy - Nancy Carney, RN – BDSRA RN Medical Liaison/Educator

What is appropriate, causes and suggested practices. – 167 pages

14.  How to Organise Special Events & Festivals -       Rob Tonge, Tourism Management Series

A Practical guide for Non-Profit Clubs & Associations. – 63 pages

15.  Instructions for Hospitals and Emergency Room Visits -

  Nancy Carney, RN – BDSRA RN Medical Liaison/Educator

16.  Dementia in Children, Teenagers and Young Adults -

A guide for parents, teachers and care professionals.  This book addresses the dementia issues that many families experience, especially those who have children with JNCL. The book explains what can cause dementia, symptoms, and different therapy interventions. - 29 pages

Nancy Carney, RN – BDSRA RN Medical Liaison/Educator

17.  Therapy and Teaching with Batten Disease -

A data source based on survey research with Australian participants.  Investigates similiarities of care, strategies used by parents, teachers and therapists.    Compiled by BDSRA Australian Chapter

18.  The Bumpy Road of Battens

A beginner’s guide to getting Programs and Services. Amy Lombardi, MSW, LSW – BDSRA USA Family Services  - 25 pages.

19.  Medications -  Nancy Carney, RN – BDSRA RN Medical Liaison/Educator

A compilation of medication most commonly used by children with Batten Disease.  Includes anticonvulsants, antispasmodics, antidepressants, sedation, drugs for other problems. – 139 pages

20.  Respiratory System -  ** Nancy Carney, RN – BDSRA RN Medical Liaison/Educator

A look at the respiratory system, what happens with Batten Disease and how to deal with some of the problems. – 82 pages

21.  Transition to Adulthood Checklist  – Amy Lombardi, – BDSRA USA Family Services

22.  Death & Dying: A Helpful guide in dealing with the many ‘End of Life’ Issues  –

Amy Lombardi, – BDSRA USA Family Services

23.  How to Help Siblings Cope:  A resource guide for understanding how

siblings deal with grief and loss   –Amy Lombardi, – BDSRA USA Family Services

Note:  Most publications have been produced by the BDSRA in USA, therefore terminology and in some instances may be applicable to the United States only.