Chapter Locator

Alabama *

President: Becky Lucas –  beckylucas7@att.net

Heart of America *

States/regions served: KS, MO
President: Ron Hein –  larhein@peoplepc.com

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
Website:  http://metronynjbdsra.org

Midwest *

States/regions served: IL, Northwest IN, IA, Southern WI
President: Larry McDonough – barblarmcd@aol.com

New England *

States/regions served: CT, ME, MA, NH, RI, VT
President: Moe St. Gelais – Moe@ne-bdsra.org
Vice President: Jean St. Gelais – Jean@ne-bdsra.org

Northern California *

States/regions served: Northern CA, Northern NV
President: Joe Allio – alliojoseph@yahoo.com

Ohio *

States/regions served: OH, Eastern IN, Northern KY, Western PA, WV
President: Ann Salladin (614) 755-2986; aswildchild@yahoo.com

Southeast *

States/regions served: NC, SC, VA
President: Debbie Lowther
Location: Raleigh, NC, USA
Website:  http://ourboysjourney.wordpress.com
Facebook:  http://www.facebook.com/people/Chris-Hawkins/1038629719
Contact:  chawk@live.com

Tennessee *

States/regions served: TN, Southern KY
President: Sherry Hatchett - sherryhatchett@comcast.net

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: Vanessa Anderson – vanessa@battens.org.au
Website:  www.battens.org.au

Canada *

States/regions served: Serving all 10 provinces in Canada
President: Bev Maxim – gmaxim@accesscomm.ca

New Zealand *

Newly formed chapter in 2011
President: Ra Timms – rttimms@slingshot.co.nz

South Africa *

President: Pam Jooste  – shanty@lantic.net

South America *

States/regions served: Serving Brazil and other countries in South America
President: Raquel de Faria
Website:  http://www.abdb.com.br/index.html

Spain *

President: Elena Lopez-Davalillo
Website: www.aefal.org