Chapter Locator

Heart of America *

States/regions served: KS, MO
President: Ron Hein –

Metro *

States/regions served: NJ, NY
The Metro NY/NJ Chapter of BDSRA was formed in 1999 after recognizing there were several families in the Metro area with children stricken by Batten disease. Our children vary in the type of NCL they carry, as well as their ages and stages of the disease, and, tragically, many of our children are now angels. There are countless difficulties and struggles that we endure as parents of these special children, and yet we know we need not look any further than their precious faces to find the blessing in each day.
Location: Middlesex, NJ

Midwest *

States/regions served: IL, Northwest IN, IA, Southern WI
President: Larry McDonough –

Ohio *

States/regions served: OH, Eastern IN, Northern KY, Western PA, WV
President: Brock Benroth;

Southeast *

States/regions served: NC, SC, VA
President: Debbie Lowther
Location: Raleigh, NC, USA

Australia *

The Australian Chapter of the BDSRA was formed in 1995 by parents of children affected by Batten Disease
Location: 9 Norton Avenue, Killarney Vale, 2261 NSW, Australia
Contact: Tel: +1 02 43345785
Director: Jenny Rixox –

Canada *

States/regions served: Serving all 10 provinces in Canada
President: Bev Maxim –

New Zealand *

Newly formed chapter in 2011
President: Ra Timms –

South Africa *

President: Pam Jooste  –

South America *

States/regions served: Serving Brazil and other countries in South America
President: Raquel de Faria

Spain *

President: Elena Lopez-Davalillo