Read BDSRA’s 2024 Impact Report | Batten Disease

Dear Friend,

Because of your support, 2024 was a year of progress for the Batten community. Together we:

• Welcomed 337 attendees at the Annual Family Conference, building connection and community.
• Added 133 new family registries to advance research.
• Mobilized 832 advocates, who sent 2,332 messages to Congress for newborn screening.

Behind these numbers are real families and stories of courage. To learn more about our accomplishments, please view the Impact Report here.

But our work is far from finished. Your support in 2024 planted seeds for further progress in 2025 and beyond. With your help, we can expand family support, fund critical research, and amplify the voices of Batten families worldwide.

Every gift brings us closer to a future where no family faces Batten disease alone. Thank you for standing with us.

With gratitude,

Amy Fenton Parker,

BDSRA Foundation President & CEO