BDSRA Annual Family Conference

BDSRA Foundation Annual Family Conference

The Batten Disease Support, Research, and Advocacy Foundation (BDSRA Foundation) exists to support families throughout the Batten journey, fund and facilitate research, and advocate for treatments and cures. In addition to virtual programming offered year-round, BDSRA hosts the largest Annual Family Conference in the world for Batten disease. The conference brings together domestic and international families, researchers, clinicians, and industry professionals.

For the conference, BDSRA helps provide:

• Presentations on caregiver support, advocacy, research, and clinical updates
• FREE childcare with skilled help for children 5 and under, as well as individuals of all ages living with Batten disease
• Breakout support groups for parents by CLN type
• The BDSRA SIBs program for Batten siblings offers a “welcome” pizza and pool party, research, grief support, and Ask-A-SIB sessions (for parents), plus two offsite activities
• A Saturday night Dinner Dance for all attendees
• Opportunities to participate in research studies
• Pet & Music therapy
• The Life Goes On program offers activities for bereaved Batten parents and grief support sessions
• Supplements all meal expenses for families
• Provides extra funding for families who may not otherwise be able to attend