June 9, 2024

Together, We Are Batten Advocates for a Cure. 

Contact your legislators by sending them a pre-written letter through our advocacy module. The pre-written letter urges your congressional representatives to drive legislative efforts prioritizing Newborn Screening for CLN2 Batten disease and to petition the FDA to adopt a more agile approval process for rare and ultra-rare disease treatments.

Welcome!

Thank you for visiting my team’s fundraising page in support of International Batten Disease Awareness Day 2024. We hope you will consider supporting us by donating or becoming a team member!

Advocate with us by visiting the main International Batten Disease Awareness Day page and browsing the activities. 

Team captains may customize their team's fundraising page with photos, stories from their Batten journeys, and fundraising goals. 

For any questions or assistance, please email support@bdsrafoundation.org