the BookStore

BDSRA Publications
The following publications are provided as a service by Batten Disease Support and Research Association free of charge. However, any donation to offset cost of production would certainly be appreciated. They can be ordered by calling BDSRA at 1-800-448-4570 or by email to bdsra1@bdsra.org. Those available in PDF require Acrobat Reader version 5 or later.

1. Batten Disease: An Easy to Understand Guide - LW 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
Download PDF ~ 4 MB

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. Mom 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 2006) - 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 Individualized Education Program (IEP), alternative communication, vision, social interactions, therapy, law, etc. - 60 pages
Download PDF ~ 2 MB

4. Will You Walk With Us? - Batten Disease and Hospice Care - LW Johnston
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
Download PDF ~ 1.75 MB

5. Fundraising Ideas for Working Toward a Cure - Linda Houghtby & Shannon 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 BDSRA who has had a success with that event will help with the practical side of it and act as a guide. - 8 pages

6. 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
Download PDF ~ 218 KB

7. Batten Disease; Insights for Parents - LW 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

8. Medications - Nancy Carney, RN - BDSRA RN Medical Liaison/Educator
A compilation of medication most commonly used by children with Batten Disease. Includes anticonvulsants, antispasmodics, anitidepressants, sedation, drugs for other problems. - 139 pages

9. 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.
Download PDF ~ 2 MB

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.
Download PDF ~ 2 MB

11. Pressure Sores - Nancy Carney, RN - BDSRA RN Medical Liaison/Educator
What is a pressure sore, causes, how to prevent and how to treat.
Download PDF ~ 1/2 MB

12. Dental Issues - Nancy Carney, RN - BDSRA RN Medical Liaison/Educator
What to look for, causes and suggested procedures.
Download PDF ~ 2 MB

13. Physical Therapy - Nancy Carney, RN - BDSRA RN Medical Liaison/Educator
What is appropriate, causes and suggested practices.
Download PDF ~ 5 MB

14.Hospital and Emergency Room Visits - LW Johnston, Ex Dir - BDSRA and Nancy Carney, RN - BDSRA RN Medical Liaison/Educator
This booklet is a reference guide for Parents/Caregivers to prepare in order to help quickly communicate your child's medical information to hospital personnel in times of crisis.
Download PDF ~ 1.3 MB

Other publications available through BDSRA:
These books can be ordered by calling BDSRA at 1-800-448-4570 or email to bdsra1@bdsra.org.

1. Nothing Can Separate Us - Connie Jackson - Green Key Books - 2002
The story of one mother's journey through life with three children with Batten
Disease. - 202 pages - $12 plus $1.50 S&H

2. Forever Special Friends - Susan Greig - 1995
The story of a little girl with Batten Disease as told through the eyes of her best
friend. Excellent book for young children that helps to explain Batten Disease.
18 pages - $10 plus $1.50 S&H or order online w/PayPal at www.freewebs.com/foreverspecialfriends

Other publications suggested by BDSRA:

1. "The Unconquerable Spirit" by Kathleen Morton - $24.50 - To order ,
find out more on the web site: kathleenmorton.com and/or email: ktmorton@cox.net

2. "Neuronal Ceroid Lipofuscinoses (Batten Disease) in Latin America- An Update" - Noher de Halac, Dodelson de Kremer R, (Eds) - Departamento de Publicaciones - Universidad Nacional de Córdoba - $20 + $5 S&H - To order email: nclcemeco@nclcemeco.com.ar or postage mail to:
Rita Noher de Halac
Colombia 47
5000 Córdoba
Argentina