BDSRA Foundation

BDSRA Foundation Official Page of Batten Disease Support + Research + Advocacy Foundation. Donate: https://t.co/soo8KxPl7I Please share with us your pictures, stories and events.

This site is for all families and friends of those affected with Batten disease. Also, be sure to invite others to like this page to help spread awareness.

BDSRA's Grief Chat welcomes all bereaved Batten parents, no matter where they are in their grief journey.This month's to...
06/24/2026

BDSRA's Grief Chat welcomes all bereaved Batten parents, no matter where they are in their grief journey.

This month's topic: When the World Keeps Moving

Join us this Sunday, June 28 at 7:00 PM ET / 6:00 PM CT alongside fellow bereaved Batten parents. First-time attendees, please register here to receive your Zoom link for all future Grief Chats: https://ow.ly/e0QJ50ZgrvH

If you have already registered, you do not need to register again.

Are you attending the 2026 BDSRA Annual Family Conference for the first time?Join Heather and Chris for a virtual meet a...
06/22/2026

Are you attending the 2026 BDSRA Annual Family Conference for the first time?

Join Heather and Chris for a virtual meet and greet to learn what to expect, ask questions, and connect with other families before arriving in Chicago. Whether you are new to BDSRA or simply attending the conference for the first time, we would love to welcome you and help you feel prepared for a great experience.

Thursday, June 25, 2026
7:00 PM ET / 6:00 PM CT

Register here: https://web.charityengine.net/NewFamilyMeeting

Today is the last day.June 10 is the deadline to register at the early bird rate, order T-shirts, and sign up for SIB an...
06/10/2026

Today is the last day.

June 10 is the deadline to register at the early bird rate, order T-shirts, and sign up for SIB and LGO outings. After today, rates go up and outings are closed.

If you have been on the fence, this is your sign. We would love to see you in Chicago.

Register before midnight tonight: https://ow.ly/EP7S50Z78WT

2 days left. Tomorrow is the last day.June 10 is the final deadline to register at the early bird rate, order T-shirts, ...
06/09/2026

2 days left. Tomorrow is the last day.

June 10 is the final deadline to register at the early bird rate, order T-shirts, and sign up for SIB and LGO outings. After tomorrow, rates go up and outings close.

Register now: https://ow.ly/YSSw50Z78PA

Today is International Batten Disease Awareness Day.This year, we are joining a global movement called Forget Me Knot, t...
06/09/2026

Today is International Batten Disease Awareness Day.

This year, we are joining a global movement called Forget Me Knot, tying a knot to commemorate those we have lost and those we are still fighting for.

Tie a knot on your wrist, your mailbox, your car mirror, anywhere, and share a photo using . Each knot is a visible symbol of remembrance and a promise to never give up the fight.

Forget Me Knot because every child deserves to be remembered, no matter how rare their journey.

If you would like to support the BDSRA community today, a donation goes directly toward research, family programs, and advocacy for those living with Batten disease.

Donate here: https://ow.ly/cmIr50Z9bPc

3 days left and the deadline is closing in.June 10 is the last day to: ✅ Register at the early bird rate ($235 for adult...
06/08/2026

3 days left and the deadline is closing in.

June 10 is the last day to:

✅ Register at the early bird rate ($235 for adult parents and caregivers)
✅ Order your conference T-shirt ($10 for adults, complimentary for SIBs and affected loved ones)
✅ Sign up for SIB outings - Medieval Times on Friday, Bowling on Saturday
✅ Sign up for LGO activities - Escape Room and Paint and Sip

Don't wait. Register here: https://bdsrafoundation.org/2025-bdsra-annual-family-conference/2026-registration/

3 days left and the clock is ticking!Early bird registration, T-shirt orders, and SIB and LGO outing sign-ups all close ...
06/07/2026

3 days left and the clock is ticking!

Early bird registration, T-shirt orders, and SIB and LGO outing sign-ups all close on June 10. If you have not locked everything in yet, now is the time.

Register here: https://ow.ly/rCyI50Z78JQ

06/05/2026

Hello everyone, due to an availability issue, we need to postpone our Town Hall Meeting that was originally scheduled for this coming Sunday. The Board apologizes and looks forward to re-scheduling during the conference, so stay tuned!!! Thank you for your understanding ! If you haven't already done so, please register for the conference. We are looking forward to seeing you there.
The BDSRA Board

6 days to go. Don't forget your T-shirt!All outings and T-shirts must be purchased before June 10. T-shirts are complime...
06/05/2026

6 days to go. Don't forget your T-shirt!

All outings and T-shirts must be purchased before June 10. T-shirts are complimentary for SIBs, SIB guests, and Batten affected loved ones, and required for everyone attending SIB outings. For all others, T-shirts are available for $10.

Make sure your family is set up before the deadline. Register and order here: https://bdsrafoundation.org/2025-bdsra-annual-family-conference/2026-registration/

Address

PO Box 30049
Gahanna, OH
43230

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+18004484570

Website

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