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Social MediaTom Evans2026-01-20T15:06:46-05:00

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SUPPORT + RESEARCH + ADVOCACY. We are #BattenAdvocatesForACure. Click the link below for news, events, and how to donate.

🚨 CALLING FOR VOLUNTEERS 🚨 Joining us in Chicago

Our own Dr. Ineka Whiteman will join fellow Batten

The March 21 deadline is nearly two weeks away!! R

Our February edition of The Illuminator Newsletter

Some days may feel heavier than others during our

FINAL CALL FOR SHOPPING! 🛍️👕 TOMORROW, MARCH 4, i

🚨 NIH UPDATES 🚨 Our Noah Siedman virtually attend

Check out this month’s events and mark your calend

Everyone in the Batten disease community has had t

Let’s share some facts about Rare Diseases! SHARE

Today and every day, we recognize, stand with, and

BDSRA Board Secretary, Gretchen Fieschko, had the

TODAY'S THE DAY! 🐼❤️ ✅ Order @officialpandaexpres

BDSRA Board Vice Chair and Batten mom Suzette Jame

🚨 CALLING FOR VOLUNTEERS 🚨 Joining us in Chicago

SHOP BY MARCH 4: @papercloudsapparel will donate 5

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