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Social MediaTom Evans2025-01-09T17:31:41-05:00

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

🚨🚨 FINAL CALL 🚨🚨 TODAY is the final d

🚨🚨 FINAL CALL 🚨🚨

TODAY is the final day to complete our Post-Conference Surveys. LINK IN BIO! There are surveys to review the Overall Conference, Life Goes On program for bereaved parents, and Childcare.

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp #surveys #bereavement #childcare

What’d you think of this year’s Annual Family

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. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp #surveys #bereavement #childcare

IT’S HERE! 📸 View the full photo gallery from

IT’S HERE! 📸 View the full photo gallery from the 2025 Annual Family Conference - link in bio!

Thank you to @iragrahamiiiphotography for all his TREMENDOUS work!

#BattenAdvocatesForACure #BDSRAconference2025 #photogallery #BattenDisease #RareDisease #Nebraska #Conference #fyp

🚨 SURVEYS CLOSE THIS WEEK 🚨 LINK IN BIO! Yo

🚨 SURVEYS CLOSE THIS WEEK 🚨

LINK IN BIO! 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 #BattenDisease #RareDisease #Nebraska #Conference #fyp #surveys #bereavement #childcare

Your children are always in great hands in our Exp

Your children are always in great hands in our Explorers’ Camp at the Annual Family Conference! 💛 Complete the childcare survey today: https://ow.ly/WMhj50WpzGt

#BattenAdvocatesForACure #BDSRAconference2025 #childcare #BattenDisease #siblings #RareDisease #Nebraska #Conference #fyp

The last day of the Annual Family Conference is re

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

Batten Disease Support, Research, and Advocacy (BD

Batten Disease Support, Research, and Advocacy (BDSRA) Canada, the BDSRA Foundation, and its Batten Disease Clinical Centers of Excellence (CoEs) applaud the British Columbia Government’s decision to reinstate funding for Charleigh Pollock’s life-sustaining enzyme replacement therapy, Brineura, to treat CLN2 Batten disease. Read the full press release by clicking the link in our bio!

Friendships, connections, and memories that will l

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 ❤️

@bdsrasibs

Attending the Annual Family Conference can be chal

Attending the Annual Family Conference can be challenging for bereaved Batten parents. If you decide to join us at this event, please know you’ll be greeted with nothing but love, compassion, and support from fellow bereaved parents through our Life Goes On program, who will help you during your grief and Batten journey. 💛

Complete our Post-Conference surveys by clicking the link in our bio.

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #bereavement #grief #RareDisease #Nebraska #Conference #fyp

There’s something for EVERYONE at the BDSRA Annu

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 (LINK IN BIO) and commenting below.

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp

Thank you to the @lincolnchildrensmuseum and the @

Thank you to the @lincolnchildrensmuseum and the @lincolnchildrenszoo for hosting a pre-conference and post-conference outing for our Batten families!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp

OFFICE HOURS: Our staff is getting a much-needed p

OFFICE HOURS: Our staff is getting a much-needed post-conference break this week, so check our availability!

#BattenAdvocatesForACure #BattenDisease #RareDisease #Conference #fyp

And that’s a wrap, another BDSRA Annual Family C

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—Batten families, SIBs, bereaved parents, researchers, clinicians, volunteers, sponsors, presenters/speakers, board members, @sswmeetings, @iragrahamiiiphotography, and many others, we couldn’t have done this without you. Please take a moment and complete our Post-Conference Surveys. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp

Day 2️⃣ Photo Dump! 📸📸 #BattenAdvocates

Day 2️⃣ Photo Dump! 📸📸

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp

It takes a Village. As we honor and remember our B

It takes a Village. As we honor and remember our Batten angels at this morning’s Celebration of Life, we’d like to take a moment to thank the Dilley family for keeping our Memorial stored safely, Linda Barkhurst and Darlene Royalty for their organization and coordination, and Noah Siedman and our many volunteers for constructing the Memorial for display and interaction at this week’s Conference.

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp

We ❤️ the parade and the Dinner Dance! No bett

We ❤️ the parade and the Dinner Dance! No better way to end the final full day of the Annual Family Conference.

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp

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