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June 9, 2025
Our goal is to raise awareness and funds by advocating for the Batten disease community affected by all CLN types.
Funds raised will go towards the BDSRA Foundation's greatest need(s). If you're raising funds for this specific fundraiser through your Fam Fund, you may choose where your donations are directed (greatest need, support, research, or advocacy).
Together, We Are Batten Advocates for a Cure.
The deadline to order T-shirts has passed. T-shirts will be shipped in late May. You may still register for the International Batten Disease Awareness Day Virtual 5K on June 9.
Fam Funds allows your family to share your story within your communities and effectively raise awareness and direct funds to support a specific mission area year-round. Your Fam Funds Page is your International Batten Disease Awareness Day page. With your Fam Funds link, invite donors to donate in honor of Batten Awareness Day. Batten Awareness Day funds generated through your Fund will be directed to your chosen mission area.
PARTICIPATE IN OTHER BDSRA EVENTS:
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- Coffee Chats, hosted by Batten parent Heather Dainiak, are held twice a month. These chats are a safe space for parents and caregivers of all CLN types. Click here to learn more.
- Grief Chats are held for bereaved Batten parents, as part of our Life Goes On program, every other month at 7 PM EDT on a Sunday. Click here to learn more.
