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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.

SHOP TODAY: We have secured fundraising with sever

SHOP TODAY: We have secured fundraising with several outside companies that are partnering with us and giving money back to the BDSRA Foundation. LINK IN BIO!

#BattenAdvocatesForACure #Shop #Fundraising #BattenDisease #giveback #fyp

✨ Let’s get to some Friday reflection ✨ We

✨ Let’s get to some Friday reflection ✨

We want to know what’s next for you in your battle with Batten disease. Let us know in the comments! ⬇️

#FridayReflection #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Cure #RareDisease

REMINDER: Our Grief Chat for bereaved parents is t

REMINDER: Our Grief Chat for bereaved parents is this Sunday at 7 PM EDT! Join fellow bereaved parents for an evening of support and discussion. Please email heather@bdsrafoundation.org for any questions about the session.

You only need to complete the registration form once, and you will receive email reminders and the Zoom link for all Grief Chat sessions. LINK IN BIO!

#Grief #Chat #Loss #BattenDisease #Support #BattenAdvocatesForACure #FYP

The end of the school year can bring mixed emotion

The end of the school year can bring mixed emotions—graduations, moving-up ceremonies, and the reality of watching other children grow while yours faces a different path. As routines shift and summer begins, this month’s Coffee Chats is a space to discuss the stress, sadness, and uncertainty that this season can bring. Register today by clicking the link in our bio!

#BattenAdvocatesForACure #Coffee #Chat #BattenDisease #Support #Summer #fyp

We are proud to welcome @manildrausa as a first-ti

We are proud to welcome @manildrausa as a first-time Annual Family Conference sponsor! Interested in sponsoring and/or attending next month’s Conference in Lincoln, Nebraska? Get all your Conference info here by clicking the link in our bio!

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

🚨🚨 DEADLINE & ORIENTATION DAY 🚨🚨 TODA

🚨🚨 DEADLINE & ORIENTATION DAY 🚨🚨

TODAY is the deadline to order Conference T-shirts and register for LGO and SIBs outings! The deadline to reserve rooms in the hotel block has been EXTENDED to July 1. ALSO, tonight at 7:30 PM EDT is the Newly Diagnosed & First-Time Conference Attendee Orientation. LINKS IN BIO!

IMPORTANT DEADLINE: BDSRA SIBs and the Life Goes O

IMPORTANT DEADLINE: BDSRA SIBs and the Life Goes On program gather each year at the Annual Family Conference for a weekend of social and recreational activities. The deadline to register for each program’s off-site activities is TOMORROW. Link in bio!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #FYP

ONE WEEK FROM TODAY: Bereaved Batten parents are i

ONE WEEK FROM TODAY: Bereaved Batten parents are invited to attend our virtual Grief Chat on Sunday, June 22, at 7 PM EDT. Please email heather@bdsrafoundation.org for any questions about the session. First-time attendees must register to attend. LINK IN BIO!

#Grief #Chat #Loss #BattenDisease #Support #BattenAdvocatesForACure #FYP

Happy Father’s Day to all Batten dads! Your advo

Happy Father’s Day to all Batten dads! Your advocacy, care, and love don’t go unnoticed. Thank you for all you do. Give a shoutout to a special Batten dad in the comments! 💙

#FathersDay #HappyFathersDay #BattenAdvocatesForACure

THE CONFERENCE AGENDA IS HERE! LINK IN BIO! See w

THE CONFERENCE AGENDA IS HERE!

LINK IN BIO! See what next month’s Annual Family Conference in Lincoln, Nebraska has to offer! DON’T FORGET – June 17 is the deadline for the hotel room block, T-shirts, and registration for LGO and SIBs outings and the Newly Diagnosed & First-Time Conference Attendee Orientation.

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #Orientation #Coffee #Grief #Conference #FYP

The Batten disease community is most powerful when

The Batten disease community is most powerful when we all come together. For today’s Friday Reflection, we want to know how you found your community/people to go with you into your Batten battle. Let us know in the comments! ⬇️

#FridayReflection #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Cure #RareDisease

‼️NOT DONE YET‼️ We are accepting donatio

‼️NOT DONE YET‼️

We are accepting donations for Batten Disease Awareness Day through this Sunday! We also encourage you to use our pre-written letter and script to email and call your representatives through Sunday to discuss the importance of Medicaid and research in our Batten disease community. Visit the main Batten Awareness Day page - LINK IN BIO!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Cure #RareDisease #FYP

🚨 REGISTER TODAY 🚨 Learn more about our upc

🚨 REGISTER TODAY 🚨

Learn more about our upcoming events by visiting bdsrafoundation.org or clicking the link in our bio!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #Orientation #Coffee #Grief #Conference

We are ONE MONTH AWAY from Day 1 of the Annual Fam

We are ONE MONTH AWAY from Day 1 of the Annual Family Conference! June 17 is the deadline for reserving hotel rooms, ordering T-shirts, and registering for SIBs and Life Goes On outings. The Newly Diagnosed & First-Time Conference Attendee Orientation is also on June 17! LINKS IN BIO!

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

You never fail to amaze us. To our Batten communit

You never fail to amaze us. To our Batten community, donors, families, SIBs, and more, THANK YOU for advocating and raising awareness and funds for International Batten Disease Awareness Day. We will always be here to battle alongside you. Thank you for continuing to battle with us. Donations are still trickling in! Give today to help support Batten families. LINK IN BIO!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Cure #RareDisease #FYP

A class act from our Centers of Excellence leaders

A class act from our Centers of Excellence leadership team yesterday!

Thank you to this extraordinary team of people, who collaborate tirelessly behind the scenes to improve care and drive research for all those living with Batten disease.

#BattenDay2025 #ForgetMeKnot #BattenAdvocatesForACure #BattenResearch #CentersofExcellence #BattenDisease #Awareness #Advocacy #Cure #RareDisease #FYP

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