BDSRA Foundation

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BDSRA Foundation Batten Disease Support, Research and Advocacy. The official page of BDSRA Foundation. Donate: https://t.co/soo8KxPl7I

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

A new piece of the Batten disease puzzle, revealing connections across multiple forms. We are glad to share important ne...
10/15/2026

A new piece of the Batten disease puzzle, revealing connections across multiple forms.

We are glad to share important new research, jointly funded by the Batten Disease Global Research Initiative (BDGRI) and NCL Stiftung, published in Nature Cell Biology.

Led by Dr Kasparas Petkevicius at the University of Cambridge, the research reveals that CLN8 plays a key role in producing BMP, a specialised fat molecule that helps keep lysosomes, the cell's recycling centres, working properly. The study shows that CLN8 and CLN5, two different Batten disease proteins, work together to make BMP.

Researchers also showed that the biochemical defect caused by loss of CLN8 could be bypassed experimentally, an early foundation for future therapeutic research across multiple NCL forms.

Congratulations to Dr Petkevicius and team.

Read the summary and the article here: https://tinyurl.com/3m2fvbd9

Today is the last day to apply for the BDSRA Board of Directors. Applications close tonight: https://ow.ly/7pZn50ZWwUJ  ...
10/15/2026

Today is the last day to apply for the BDSRA Board of Directors.

Applications close tonight: https://ow.ly/7pZn50ZWwUJ

Our monthly Coffee Chat is this Friday, October 16 at 12:00 PM ET. Coffee Chats are open to parents and caregivers of al...
10/14/2026

Our monthly Coffee Chat is this Friday, October 16 at 12:00 PM ET.

Coffee Chats are open to parents and caregivers of all CLN types, no matter where you are in your Batten disease journey. No pressure, no obligation, just understanding, connection, and a chance to breathe.

If you have already registered you do not need to register again. First-time attendees, register here: https://ow.ly/KCPV50ZWwMB

Final days. BDSRA Board applications close Thursday, October 15.If you have been meaning to apply, now is the time.https...
10/13/2026

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

If you have been meaning to apply, now is the time.

https://ow.ly/GPya50ZWwJt

Thank you for an unforgettable weekend this year!Months later, we are still thinking about the 2026 BDSRA Annual Family ...
10/12/2026

Thank you for an unforgettable weekend this year!

Months later, we are still thinking about the 2026 BDSRA Annual Family Conference. The conversations in the hallways, the research that gave families new questions to ask, the parade at the banquet, the Celebration of Life. Thank you to every family who travelled to Chicago and to every volunteer, clinician, researcher and sponsor who made it possible.

Mark your calendars: the 2027 BDSRA Annual Family Conference will be held July 22-25, 2027 in Indianapolis, Indiana. Planning is underway and we will share more as details are confirmed.

As we work to make next year even better, we would love to hear from you. If you attended in 2026 and have not yet filled out the conference survey, please take a few minutes. Your feedback shapes what 2027 looks like.

https://ow.ly/MQ2o50ZWwAb

BDSRA's Grief Chat is TONIGHT at 7:00 PM ET / 6:00 PM CT.  Tonight's topic: Guilt in Batten Disease Grief: Rational or I...
10/11/2026

BDSRA's Grief Chat is TONIGHT at 7:00 PM ET / 6:00 PM CT.

Tonight's topic: Guilt in Batten Disease Grief: Rational or Irrational?

If you have already registered you do not need to register again. First-time attendees, register here: https://ow.ly/GYpr50ZWwoE

One week left to apply for the BDSRA Board of Directors.  Applications close October 15. If you have been thinking about...
10/10/2026

One week left to apply for the BDSRA Board of Directors.

Applications close October 15. If you have been thinking about it, this is the week.

We are looking for people with experience in SIBS leadership, law, special education, human resources, IT, fund accounting, fundraising, and marketing or public relations. You do not need to check every box.

Board members shape where BDSRA goes next, and right now that work matters more than usual.

Apply here: https://ow.ly/27SW50ZWwpE

BDSRA's Grief Chat is this Sunday, October 11 at 7:00 PM ET / 6:00 PM CT.  Grief Chat welcomes all bereaved Batten paren...
10/09/2026

BDSRA's Grief Chat is this Sunday, October 11 at 7:00 PM ET / 6:00 PM CT.

Grief Chat welcomes all bereaved Batten parents, no matter where you are in your grief journey. This month's topic: Guilt in Batten Disease Grief: Rational or Irrational?

If you have already registered you do not need to register again. First-time attendees, register here: https://ow.ly/QBfr50ZWwnJ

The BDSRA Board of Directors Town Hall is TOMORROW at 7:00 PM ET / 4:00 PM PT. Not registered yet? Sign up here to recei...
09/26/2026

The BDSRA Board of Directors Town Hall is TOMORROW at 7:00 PM ET / 4:00 PM PT.

Not registered yet? Sign up here to receive your Zoom link: https://ow.ly/eUAv50ZMOow

The BDSRA Board of Directors Virtual Town Hall is Sunday, September 27 at 7:00 PM ET / 4:00 PM PT. Complete the registra...
09/19/2026

The BDSRA Board of Directors Virtual Town Hall is Sunday, September 27 at 7:00 PM ET / 4:00 PM PT.

Complete the registration form once and you will receive the Zoom link to join: https://ow.ly/vFy750ZMOnY

A live Q&A will be featured in the Town Hall. If you are unable to attend or prefer not to ask your question during the live session, you may submit a question anonymously by emailing [email protected] with ""Town Hall Question"" in the subject line. Submitted questions may be answered during the live session. Not all submitted questions may be answered due to time and appropriateness.

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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

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