BDSRA Foundation

@BDSRA

Batten Disease Support, Research, & Advocacy. Together, we are #BattenAdvocatesForACure. Donate here: ow.ly/PHs450Qkbl5

Gahanna, Ohio linktr.ee/bdsra Joined August 2009

213 Following 1K Followers 3.1K Posts

Latest posts 5

🔬 BDGRI grant applications are now open.

Expressions of Interest invited from researchers worldwide working in Batten disease or related fields.

📅 EOI deadline: 14 December 2026

Guidelines and details: battenresearch.org

#BattenDisease #BDGRI

battenresearch.org Global Research Initiative SIGN UP FOR THE BDGRI MAILING LIST ABOUT THE BATTEN DISEASE GLOBAL RESEARCH INITIATIVE Founded in 2024, the Batten Disease Global Research Initiative is a consortium of peak patient advocacy organi...

BDSRA Foundation @BDSRA Oct 13

Final days. BDSRA Board applications close Thursday, October 15.

ow.ly/6PYz50ZWwL1

#BattenDisease #BDSRA

web.charityengine.net BDSRA Board Member Application Form BDSRA Foundation | Powered by CharityEngine

BDSRA Foundation @BDSRA Oct 12

We are still thinking about the 2026 BDSRA Annual Family Conference.

Save the date: the 2027 conference is July 22-25 in Indianapolis.

Attended in 2026? Your survey feedback shapes next year.

ow.ly/qEF950ZWwHa

docs.google.com BDSRA 2026 Annual Conference Overall Evaluation

BDSRA Foundation @BDSRA Sep 16

BDSRA Foundation is accepting applications for our Board of Directors through October 15. We are seeking experience in SIBS leadership, law, special education, HR, IT, fund accounting, fundraising and marketing.

Apply: ow.ly/hTEz50ZMOnf

#BattenDisease #RareDisease

web.charityengine.net BDSRA Board Member Application Form BDSRA Foundation | Powered by CharityEngine

BDSRA Foundation @BDSRA Sep 13

Families living with Batten disease are the experts in their own experience. Kennedy Krieger Institute is inviting caregivers and affected adults to help shape how quality of life is measured. 15-30 min, online, open through December: ow.ly/3ZXQ50ZMOmt