BDSRA is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America. BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.
ABOUT THE CONFERENCE The BDSRA’s signature event each year is our family conference. In 2019, over 450 family members, children, and researchers attended to learn about patient care, education, and the latest research. In 2020, due to the COVID-19 pandemic, we pivoted and held our family conference virtually for the first time ever! Approximately 700 people from over 15 different countries attended sessions virtually. Each member of the family and industry experts were able to engage in [...]
Batten Families, Please consider joining us for our 1st Annual BDSRA Equipment Exchange Swap Party. This is an opportunity for individuals and families to declutter unused equipment and assist other families in the process. All items that are posted are required to be free of charge. If you need assistance with shipping, please fill out this form. Assistance is limited and will be given on a first come first serve basis. ** At this time, we can [...]