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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.

HAPPENING TONIGHT: Coffee Chat No. 2 this month ta

HAPPENING TONIGHT: Coffee Chat No. 2 this month takes place at 8 PM EDT on Zoom! If you’re a Batten parent or caregiver in the United States, Canada, and abroad, we’re here to listen to you. Complete the registration form just once, and you will receive email reminders and the Zoom link for all Coffee Chats. LINK IN BIO!

#BattenAdvocatesForACure #BattenDisease #Coffee #Chat #Support #Virtual #fyp

Our Office is closed today in observance of Memori

Our Office is closed today in observance of Memorial Day. We will return to regular office hours beginning Tuesday.

#MemorialDay #BattenAdvocatesForACure

TOMORROW: We want to hear from you! These chats ar

TOMORROW: We want to hear from you! These chats are a safe space for parents and caregivers of all CLN types in the United States, Canada, and abroad. Please attend just one session this month and complete the registration form just once if you haven’t already. LINK IN BIO!

#BattenAdvocatesForACure #BattenDisease #Coffee #Chat #Support #Virtual #fyp

📦 SHIPPED 📦 International Batten Disease Aw

📦 SHIPPED 📦

International Batten Disease Awareness Day T-shirts were taken to our local post office on Wednesday afternoon for shipment, so be on the lookout for your T-shirt(s)! THANK YOU to our Office Manager, Linda Barkhurst, for packaging over 300 T-shirts! We are grateful for all her hard work and for everyone who ordered.

You can also raise awareness by printing a racing bib and utilizing our Batten Awareness Day toolkit. LINK IN BIO!

We are proud to welcome Latus Bio as a first-time

We are proud to welcome Latus Bio as a first-time Annual Family Conference sponsor! Interested in sponsoring and/or attending this July’s Conference in Lincoln, Nebraska? Get all your Conference info by clicking the LINK IN OUR BIO! @visit_nebraska

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

🚨 WE ARE 20 DAYS AWAY FROM THE VIRTUAL 5K! 🚨

🚨 WE ARE 20 DAYS AWAY FROM THE VIRTUAL 5K! 🚨

On June 9th’s Batten Awareness Day this year, we invite you to:

1. Download and print off one of our racing bibs for the Virtual 5K (LINK IN BIO).
2. Write on it who or what you’re battling for to raise Batten Disease Awareness.
3. Post a picture of yourself and others with it, or post a picture of just the bib.
4. Please share your photo on social media, tag BDSRA, and use the hashtag #BattenDay2025.

NO ONE battles Batten disease alone, and we want to amplify that message while raising awareness and funds on June 9! Get your bibs and help us reach our $100,000 fundraising goal.

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

They’re here! 😍 Packaging is underway! 📦

They’re here! 😍 Packaging is underway! 📦

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease

Thanks to @ourpromisetonicholas, @haleysheroesfoun

Thanks to @ourpromisetonicholas, @haleysheroesfoundation, and @raresisters.batten, FREE CHILDCARE will be available at the Annual Family Conference this July! Register your Little Explorers 5 and under and affected loved ones of all ages for Explorer Day Camp. LINK IN BIO! @visit_nebraska

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

Where did the time go?! It's hard to believe Dr. I

Where did the time go?! It's hard to believe Dr. Ineka Whiteman has been with BDSRA for two years now, and yet, it seems as though she's always been a part of the team! In just that short time, she's led the charge of reconstructing the Centers of Excellence and organizing the Batten Disease Global Research Initiative. We are grateful for all that Ineka does for the Batten community and the donors who enabled us to make it happen! 2️⃣🎉👩‍🔬🧬

#HappyAnniversary #BattenResearch #BattenAdvocatesForACure #BattenDisease #Research #Science #fyp

There are lots of important events and deadlines c

There are lots of important events and deadlines coming soon! Check them out in these graphics and click the LINK IN OUR BIO to learn more.

#BattenAdvocatesForACure #BattenDay2025 #BDSRAconference2025 #Nebraska #Events #Coffee #fyp

Need to chat? We’re here to listen. Batten par

Need to chat? We’re here to listen.

Batten parent Heather Dainiak will be hosting her monthly Coffee Chats next week! Please choose just one chat to attend this month. If you’ve already completed the registration form, you will receive reminder emails leading up to each chat and the Zoom link for all Coffee Chats. LINK IN BIO!

#BattenAdvocatesForACure #BattenDisease #Coffee #Chat #Support #Virtual #fyp

Thank you to Mary Payton’s Miracle Foundation, w

Thank you to Mary Payton’s Miracle Foundation, which will sponsor the Dinner Dance at the Annual Family Conference in Nebraska! Conference registrants may attend the Dinner Dance this July at NO COST! Learn more about our Annual Family Conference by clicking the LINK IN OUR BIO! @visit_nebraska

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

AWARENESS DAY TOOLKIT: No one battles Batten disea

AWARENESS DAY TOOLKIT: No one battles Batten disease alone, and now, when you visit the link in our bio, you’ll find helpful information on how to raise awareness within your community! The toolkit includes a letter you may use electronically or print, and a social media graphic for you to post with sample messages.

We are LESS THAN ONE MONTH away from June 9! Let’s kick this fundraiser into full gear and reach our $100,000 goal!

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

Research and clinical updates are on the agenda ag

Research and clinical updates are on the agenda again at this year’s Annual Family Conference in Nebraska! Register NOW to get the latest updates on ALL CLN types and ask any questions you have in Lincoln. LINK IN BIO! @visit_nebraska

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

Happy Mother’s Day to all Batten mothers. You ar

Happy Mother’s Day to all Batten mothers. You are all amazing, and your never-ending compassion and love make you worth celebrating each day. Thank you for everything you do. Give a shoutout to a special Batten mom in the comments! ❤️💜

#MothersDay #HappyMothersDay #BattenAdvocatesForACure

👕 LAST CHANCE FOR T-SHIRTS 👕 The official 2

👕 LAST CHANCE FOR T-SHIRTS 👕

The official 2025 Batten Awareness Day T-shirt can be yours if you register for the Virtual 5K on June 9 or make a separate purchase! You have until 11:59 PM EDT TOMORROW! Raise awareness for Batten disease today by purchasing this T-shirt. LINK IN BIO!

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

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