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Donate to Batten Disease and help fund the necessary research developments to find solutions to Batten Disease.Batten Disease: An Easy to Understand Guide
Last Updated 2009-12-03 at 14:20:48
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
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
Last Updated 2009-12-03 at 14:20:29
Compiled and edited by Lane Johnston, Executive Director
Coping for Careproviders
Last Updated 2009-12-03 at 14:20:16
Written by Elise E. Labbe, Ph.D.
Department of Psychology
University of South Alabama
Department of Psychology
University of South Alabama
Pressure Sores
Last Updated 2009-12-03 at 11:40:26
Written by Nancy Carney, RN
Family Medical Liaison/Educator
Family Medical Liaison/Educator
Physical Therapy
Last Updated 2009-12-03 at 11:40:05
Written by Nancy Carney, RN
Family Medical Liaison/Educator
Family Medical Liaison/Educator
Dental Issues
Last Updated 2009-12-03 at 11:39:45
Written by Nancy Carney, RN
Family Medical Liaison/Educator
Family Medical Liaison/Educator
Medications
Last Updated 2009-12-03 at 11:33:22
Written by Nancy Carney, RN
Family Medical Liaison/Educator
Family Medical Liaison/Educator
Death and Dying: A Helpful Guide in Dealing with the Many End-of-Life Issues
Last Updated 2009-12-03 at 08:02:18
Written by Nancy Carney, RN
Family Medical Liaison/Educator
Family Medical Liaison/Educator
Instructions for Hospitals and Emergency Room Visits
Last Updated 2009-12-03 at 07:47:14
Written by Nancy Carney, RN
Family Medical Liaison/Educator
Family Medical Liaison/Educator
Instructions for Care Providers
Last Updated 2009-12-03 at 07:46:27
Written by Lance Johnston
Executive Director
Written by Nancy Carney, RN
Family Medical Liaison/Coordinator
Executive Director
Written by Nancy Carney, RN
Family Medical Liaison/Coordinator
Gastrointestinal System
Last Updated 2009-12-03 at 07:20:10
Written by Nancy Carney, RN
Family Medical Liaison/Educator
Family Medical Liaison/Educator
The Respiratory System
Last Updated 2009-12-03 at 07:17:38
Written by Nancy Carney, RN
Family Medical Liaison/Educator
Family Medical Liaison/Educator
Teach and Be Taught
Last Updated 2009-12-03 at 07:14:51
Written by Wendy Bills, PhD
BDSRA Education Specialist
BDSRA Education Specialist
The Bumpy Road of Batten: A Beginner's Guide to Getting Programs & Services
Last Updated 2009-12-03 at 07:09:13
Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services
Coordinator of Family Services
Social Security FAQ
Last Updated 2009-12-03 at 07:08:38
Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services
Coordinator of Family Services
Medicaid FAQ
Last Updated 2009-12-03 at 07:08:14
Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services
Coordinator of Family Services
How to Help Siblings Cope
Last Updated 2009-12-03 at 07:07:59
Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services
Coordinator of Family Services
Transition to Adulthood Checklist
Last Updated 2009-12-03 at 07:07:46
Written by Amy Lombardi, MSW, LSW
Coordinator of Family Services
Coordinator of Family Services


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