You Make it Possible to Fund Our Mission

All Gifts and Donations are Vital to Support Families, Fund Research, and Raise Awareness

BDSRA funding for services, research grants, and outreach is accomplished primarily through charitable donations. Families coping with Batten disease inspire volunteers across the U.S. and North America to dedicate hundreds of hours to support the cause of BDSRA, through events, through fundraising activities, and awareness building in their home communities. Whether it’s a 5K, golf tournament, garage sale, fun run, or lemonade stand, our supporters are tireless in their efforts, and generous with their time to bring diverse groups of people together in the fundraising enterprise. We are grateful for the ongoing support, time, and efforts that volunteers devote throughout the year to raising crucial funds for research and services. At the end of each day, this generosity enables BDSRA to help families and empower families to help each other.

The BDSRA Annual Fund is organized to generate special gifts to make services and programs available to those affected by Batten disease, and to fund research initiatives in the areas of highest priority.  These gifts ensure a solid financial base for BDSRA to carry out the mission of the organization and serve the growing number of families linked by a Batten disease diagnosis.  Annual fund gifts are also a meaningful way to honor or remember loved ones affected by Batten disease and those who care for them.

Throughout many cities and states in the U.S., generous donors contribute to BDSRA through workplace giving programs such as the CFC and United Way.  In 2014 and 2015, more than $30,000 was designated to Batten disease by individuals in these programs.  Many donors also double their donations through the matching gift programs their companies provide for employees.

BDSRA manages a diverse pool of restricted funding to support research into the diagnosis, cause, and potential treatments for Batten disease.  Every year these funds are distributed to researchers and scientists through a rigorous peer-review pr