BDSRA Foundation
@BDSRA
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Batten Disease Support, Research, & Advocacy. Together, we are #BattenAdvocatesForACure. Donate here: https://t.co/soo8KxPl7I
Gahanna, Ohio
Joined August 2009
By signing up for our email list, you’ll be kept up to date! We send a monthly newsletter and important emails regarding updates on Batten disease research, clinical trials, advocacy, and upcoming events. Signing up is easy! . 🔗 #BattenAdvocatesForACure
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It's hard to believe that a year has gone by since Heather Dainiak joined the BDSRA Foundation team, and yet she's been with us all along! Heather is uniquely experienced to serve the families of North America, and often, around the world. Families can ask her about anything!
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CHECK YOUR EMAIL TOMORROW! 💻✉️ Our July newsletter will be sent to you Friday morning! This edition of The Illuminator features an Annual Family Conference recap, Board of Directors updates, details on an upcoming event, etc. Sign up for our email list:
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The next Grief Chat for bereaved Batten parents is scheduled for Sunday, August 17, at 7 PM EDT. This is a time for bereaved parents to gather and support themselves and fellow bereaved parents, no matter where they are in their grief journey:
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🧬CENTERS OF EXCELLENCE🧬. The Annual Family Conference brought together many of our clinicians from the Batten Disease Clinical Centers of Excellence (CoEs) and Clinical Research Consortium (BDCRC) for a half-day meeting in Lincoln, Nebraska. Learn more:
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At the latest Board of Directors meeting in Lincoln, Nebraska, on July 10, the BOD conducted leadership elections. Here is the new board leadership, effective January 2026 (except for the Treasurer role). Board applications are OPEN and due by August 31:
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🚨🚨 FINAL CALL 🚨🚨. TODAY is the final day to complete our Post-Conference Surveys. There are surveys to review the Overall Conference, Life Goes On program for bereaved parents, and Childcare: . #BattenAdvocatesForACure #BDSRAconference2025
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What’d you think of this year’s Annual Family Conference in Lincoln, Nebraska? Complete one of our Post-Conference Surveys and give us your feedback: . #BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease
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IT’S HERE! 📸 View the full photo gallery from the 2025 Annual Family Conference: . Thank you to Ira Graham III Photography & Films (@IraGrahamIII) for all his TREMENDOUS work!. #BattenAdvocatesForACure #BDSRAconference2025 #photogallery #BattenDisease
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🚨 SURVEYS CLOSE SOON🚨. You have until this Friday to complete our Post-Conference Surveys! There are surveys to review the Overall Conference, Life Goes On program for bereaved parents, and Childcare: #BattenAdvocatesForACure #BDSRAconference2025
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Your children are always in great hands in our Explorers’ Camp at the Annual Family Conference! Complete the childcare survey today: . #BattenAdvocatesForACure #BDSRAconference2025 #childcare #BattenDisease #siblings #RareDisease #Nebraska #Conference #fyp
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The last day of the Annual Family Conference is reserved for our Batten angels. 💜🕯️ Go behind the scenes of last Sunday’s Celebration of Life. #BattenAdvocatesForACure #BDSRAconference2025 #memorial #angels #BattenDisease #RareDisease #Nebraska #Conference #fyp
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BDSRA Canada, the BDSRA Foundation, and its Batten Disease Clinical Centers of Excellence applaud the British Columbia Government’s decision to reinstate funding for Charleigh Pollock’s life-sustaining enzyme replacement therapy, Brineura, to treat CLN2:
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Friendships, connections, and memories that will last a lifetime--for 35 years, that’s what the BDSRA SIBs program for Batten siblings has been all about❤️. Complete our Post-Conference surveys: #BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease
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Attending our Conference can be challenging for bereaved Batten parents. If you decide to join us, please know you’ll be greeted with nothing but love, compassion, and support from fellow bereaved parents through our Life Goes On program. Surveys:
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There’s something for EVERYONE at the BDSRA Annual Family Conference! What was your favorite part, activity, and/or presentation? Let us know by completing our Post-Conference surveys and commenting below: #BattenAdvocatesForACure #BDSRAconference2025
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Thank you to the Lincoln Children’s Museum and the Lincoln Children's Zoo for hosting a pre-conference and post-conference outing for our Batten families! . #BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
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OFFICE HOURS: Our staff is getting a much-needed post-conference break this week, so check our availability!. #BattenAdvocatesForACure #BattenDisease #RareDisease #Conference #fyp
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And that’s a wrap, another BDSRA Annual Family Conference is in the books! THANK YOU to everyone who traveled to Lincoln, Nebraska, and attended this year’s Conference— we couldn’t have done this without you: . #BattenAdvocatesForACure #BDSRAconference2025
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As we celebrate our Batten angels today, we’d like to thank the Dilley family for keeping our Memorial stored safely, Linda Barkhurst and Darlene Royalty for the coordination, and Noah Siedman and our volunteers for constructing the Memorial for display and interaction this week.
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