BDSRA was founded in Spanaway, Washington by Judith A. Grant. Mrs. Grant was the mother of three children with Batten Disease. Knowing of other families with children also diagnosed with Batten Disease, Mrs. Grant had the foresight to see the need for an organization of families that would foster support, education, information, referrals and advocacy. She also saw the need to promote research through the combined efforts of families and professionals.

Judith Grant was the first president of BDSRA and she was succeded by Lance Johnston, Kathleen Potterfield, Larry Killen, George Maxim and Jane Emanuel, M.D.

BDSRA was originally chartered as a non-profit corporation in the State of Washington on July 27, 1987. In 2006, BDSRA was converted to an Ohio non-profit corporation.

In April, 1991, BDSRA's national headquarters was relocated to Columbus, Ohio where it remains today.

The Batten Disease Support and Research Association (BDSRA) is the largest support and research organization in North America for families that have children with the disease. We currently serve over 1,200 families in the United States, Canada, South America, Australia, New Zealand, and South Africa, just to name a few.

There are similar family support groups in Australia, Holland/Belgium, and Latin America . The groups in the (Batten Disease Family Association) and Portugal (ADOBA) are closely aligned to BDSRA. These support groups generally stay within the confines of these nations. BDSRA helps families throughout the rest of the world.

Website Privacy

1. BDSRA is committed to safeguarding each user's privacy while viewing the organization's website. The website is not set up to track, collect or distribute personal information not entered by its visitors.
2. A cookie is a small amount of data that is sent to a user's browser from a Web server and stored on the computer's hard drive. BDSRA uses non-identifying cookies to provide easier site navigation and access to forms. Access to the BDSRA website is still granted even if a user's browser is set up to reject cookies. The organization's cookies do not generate personal data, do not read personal data from a user's computer and are never tied to anything that could be used to identify the user.
3. The BDSRA website provides links to other sites that may be of interest to those who use the organization's site. BDSRA is not responsible for the privacy practices or the content of such Web sites.
4. BDSRA is firmly committed to the principal of confidentiality of information for its activities and programs. BDSRA staff and volunteers have an ethical and legal obligation to respect the privacy all persons. Furthermore, this obligation extends to protecting and maintaining the confidentiality of all information derived from surveys, studies, databases, or organizational activities.
5. BDSRA will protect any personal information provided by our members and website users. However, BDSRA reserves the right to use aggregate, anonymous data about our users as a group. This data does not contain any personally identifiable information. For instance, the organization may use information to determine the number individuals having a specific form of Batten Disease, or the number of individuals with Batten Disease in a particular area, etc. This type of survey information is intended to allow a more targeted selection of opportunities for our users.
6. BDSRA may disclose information only in special cases when the organization have reason to believe that disclosing this information is necessary to identify, contact or bring legal action against someone who may be causing injury to or interference with BDSRA rights or property, other BDSRA users, or anyone else who could be harmed by such actions. BDSRA may also access or disclose information when the organization believes in good faith that the law requires it and for other administrative purposes necessary to maintaining the website.
7. Any personal information which is revealed by website users in messages posted on bulletin boards, chat rooms or the guest book is available to the public and can be collected and used by others. All viewpoints, ideas, proposals, information and other intellectual property posted on BDSRA's bulletin boards, chat rooms or guest book are the property of BDSRA and may be used in the furtherance of the organization's goals and objectives. BDSRA is not responsible for the content of any viewpoints, ideas, proposals, information and other intellectual property posted on bulletin boards, chat rooms or the guest book on the organization's website.
8. If any user is under the age of 18, the user must have parental permission before sending any personal information about himself or herself to the BDSRA website. BDSRA recommends that a parent supervise any child under age 18 when using the Internet and that the parent carefully reviews this privacy policy before any personal information about the child is provided to the organization's website.
9. BDSRA reserves the right to amend or alter its site privacy policy at any time without notice by posting such change to the BDSRA website.