In order to effectively combat the devastation of the disease and to fully support research efforts to unravel the mysteries on Batten, the worlds of medical science and the victims and their families must meet and work closely together to reach understanding and common goals.

In an effort to bring those common goals to fruition, the Batten Disease Support and Research Association - (BDSRA) was formed in July, 1987, by Gary and Judith Grant of Spanaway, Washington, who are parents of three Batten victims. Seeing the tremendous need for a unified entity that would work toward important goals and recognizing, as well, the need for support among victims and their families, the founders designed the association to:

• Maximize the opportunities of victims of Batten to lead as normal lives as possible.
• Provide a parent communication network, information and emotional support to families of persons with Batten Disease.
• Educate lay persons and professionals about the special needs of Batten Disease victims and their families.
• Act as a national registry for NCL researchers throughout the world.

Medical and Scientific Advisory Boards

Medical Advisory Board
Katherine Sims, MD -- Chair
Director of Neurogenetics DNA Diagnostic Laboratory
Massachusetts General Hospital

Rose-Mary Boustany, MD
Duke University & American University of Beirut
Pediatric Neurology

Jonathon Mink, MD
University of Rochester
Pediatric Neurology

Jennifer Kwon, MD
University of Rochester
Pediatric Neurology

Warren Lo, MD
Nationwide Children's Hospital--Columbus, Ohio
Pediatric Neurology

Robert Steiner, MD
Doernbecher Children's Hospital
Pediatric Neurology

Heather Adams, PhD
University of Rochester
Child Neuropsychologist in Department of Neurology

Tom Sferra, MD, PhD
University of Oklahoma Health Sciences Center
Gastroenterology

Richard Shell, MD
Nationwide Children's Hospital--Columbus, Ohio
Pediatric Pulmonologist

Scientific Advisory Board
Sandra Hofmann, MD, PhD -- Chair
University of Texas Southwestern Medical Center

David Pearce, PhD
Sanford Children's Health Research Center

Mark Sands, PhD
Washington University in St. Louis

David Sleat, PhD
Center for Advanced Biotechnology and Medicine

Jon Cooper, PhD
King's College London

Michael Brenner, PhD
The University of Alabama at Birmingham

UPDATED FINANCIAL REPORTS

2009 Annual Report | 2009 Audit Report | 2008-2009 Exempt From Income Tax Form

All of the services of BDSRA are available across the nation, for a minimal membership fee, and are available at all levels of participation. BDSRA is a not for profit 501(c)3 organization. Some of the individuals who turn to the association have need of the full range of services - contact, newsletter, research, and registry information - and are willing to assist the Association in compiling information and providing professionals with facts and observations. Others want simply to receive the newsletter and remain anonymous to all other aspects of BDSRA Whatever the needs, BDSRA can meet them.