Registration for the 2024 Annual Family Conference is officially OPEN! Take advantage of the Early Bird special that includes $5 off the $25 price of each adult registration by June 14. Join us in St. Louis July 12-14!

Register, view the agenda, activities for SIBs and LGO, and more by clicking the button below.

Congratulations to Kennedy Reed from Ohio for her winning design for the International Batten Disease Awareness Day T-Shirt Design Contest! Thank you to everyone who submitted a design this year. We surpassed last year’s submission and vote totals with 27 and 326, respectively.

Stay tuned for information on ordering T-shirts and how you can advocate leading up to June 9th! 👀

From copy paper to personnel, $5 Fridays is designed to keep the office moving. The more $5 Friday donations BDSRA receives for operations, the more money BDSRA can invest in programs, research, and advocacy.