NOTE: We are in the process of updating our publications. If you have any questions regarding the content of the publications, please contact BDSRA for additional information.
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 Lance Johnston
Coping for Care Providers
Written by Elise E. Labbe, PhD, Department of Psychology, University of South Alabama
Pressure Sores
Written by Nancy Carney, RN
Physical Therapy
Written by Nancy Carney, RN
Dental Issues
Written by Nancy Carney, RN
Medications
Written by Nancy Carney, RN
Death and Dying: A Helpful Guide in Dealing with the Many End-of-Life Issues
Written by Nancy Carney, RN
Instructions for Hospitals and Emergency Room Visits
Written by Nancy Carney, RN
Gastrointestinal System
Written by Lance Johnston and Nancy Carney, RN
The Respiratory System
Written by Nancy Carney, RN
Teach & Be Taught
Please contact BDSRA directly for this publication – 800/448-4570.
Updated June 2011
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, LSW, MSW
Social Security FAQ
Written by Amy Lombardi, LSW, MSW
Medicaid FAQ
Written by Amy Lombardi, LSW, MSW
How to Help Siblings Cope
Written by Amy Lombardi, LSW, MSW
Transition to Adulthood Checklist
Written by Amy Lombardi, LSW, MSW
How to Obtain a Disability Parking Sticker
Written by Amy Lombardi, LSW, MSW