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Progresses in Batten disease research (video)
Updated: 2010-08-30 16:25:54

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Donate to Batten Disease and help fund the necessary research developments to find solutions to Batten Disease.

Donate To BDSRA Online

2009 Annual Report



2009 Audit



Batten Disease: An Easy to Understand Guide

Information compiled by:
Sandra Hofmann, MD, PhD
Rose-Mary Boustany, MD
Krystyna Wisniewski, MD, PhD
Carole Garrard, RN
Elaine Johnston
Col. Joel Maynard
Wanda Leffler
Molly Wefel


Insights for Parents

Compiled and edited by Lane Johnston, Executive Director

Coping for Careproviders

Written by Elise E. Labbe, Ph.D.
Department of Psychology
University of South Alabama


Pressure Sores

Written by Nancy Carney, RN
Family Medical Liaison/Educator

Physical Therapy

Written by Nancy Carney, RN
Family Medical Liaison/Educator

Dental Issues

Written by Nancy Carney, RN
Family Medical Liaison/Educator

Medications

Written by Nancy Carney, RN
Family Medical Liaison/Educator

Death and Dying: A Helpful Guide in Dealing with the Many End-of-Life Issues

Written by Nancy Carney, RN
Family Medical Liaison/Educator

Instructions for Hospitals and Emergency Room Visits

Written by Nancy Carney, RN
Family Medical Liaison/Educator

Instructions for Care Providers

Written by Lance Johnston
Executive Director

Written by Nancy Carney, RN
Family Medical Liaison/Coordinator

Gastrointestinal System

Written by Nancy Carney, RN
Family Medical Liaison/Educator

The Respiratory System

Written by Nancy Carney, RN
Family Medical Liaison/Educator

Teach and Be Taught

Written by Wendy Bills, PhD
BDSRA Education Specialist

The Bumpy Road of Batten: A Beginner's Guide to Getting Programs & Services

Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services

Social Security FAQ

Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services

Medicaid FAQ

Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services

How to Help Siblings Cope

Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services

Transition to Adulthood Checklist

Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services

How to Obtain a Disability Parking Sticker

Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services