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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.

Who’s ready to sow hope for a cure with us in Ju

Who’s ready to sow hope for a cure with us in July?

REGISTER TODAY and join us in Lincoln, Nebraska for the BDSRA Annual Family Conference! The conference welcomes Batten families of ALL CLN types, bereaved families, siblings, researchers, clinicians, and more for a weekend of community, research sessions, advocacy sessions, grief chats, outings, and so much more. LINK IN BIO! @bdsrasibs

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

FINAL CALL FOR GRANT APPLICATIONS

🚨 FINAL CALL FOR GRANT APPLICATIONS 🚨

Batten families in the U.S. and Canada may apply for a grant to attend this July’s Annual Family Conference in Lincoln, Nebraska. LINK IN BIO! Read more about grant eligibility and what they cover and apply today.

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

HAPPENING TONIGHT: Our Life Goes On program for be

HAPPENING TONIGHT: Our Life Goes On program for bereaved Batten parents is hosting a Grief Chat tonight at 7 PM EDT. You only need to complete the registration form once and you will receive a Zoom link that will work for all future Grief Chats and email reminders before each scheduled Grief Chat. LINK IN BIO!

#BattenAdvocatesForACure #BattenDisease #BDSRA #Grief #Support #LifeGoesOn #BereavedParents

Ask-An-Expert webinars keep our Batten community i

Ask-An-Expert webinars keep our Batten community informed about the latest in clinical trials, research, advocacy, and more. Your $5 donations help make these webinars possible. Thank you for giving to BDSRA and for helping families navigate their uncharted journey with Batten disease. Donate today by clicking the link in our bio!

#5dollarfridays #fundraising #BattenDisease #BattenAdvocatesForACure #ClinicalTrials #Research #Advocacy #BDSRA #RareDisease

On National Siblings Day, we want to take this tim

On National Siblings Day, we want to take this time to highlight the SIBs program here at BDSRA. The SIBs program helps Batten siblings of all ages connect with others like themselves, and those connections can lead to lifelong friendships. Each year at the Annual Family Conference, SIBs can join in panel discussions and grief chats and enjoy planned recreational and social activities. We hope to see all our Batten SIBs at July’s conference. Register for the conference by clicking the LINK IN BIO! @bdsrasibs

#NationalSiblingsDay #BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #Siblings #Support

BDSRA’s Grief Chats welcomes all bereaved Batten

BDSRA’s Grief Chats welcomes all bereaved Batten parents no matter where they’re at in their grief journey. Join this Sunday’s Grief Chat alongside fellow bereaved Batten parents by completing the registration form if you’re a first-time attendee. If you’ve completed this form before, you will receive the Zoom link for all Grief Chats and email reminders. LINK IN BIO!

#BattenAdvocatesForACure #BattenDisease #BDSRA #Grief #Support #LifeGoesOn #BereavedParents

THE VOTES ARE IN!

Here is the winning d

🚨 THE VOTES ARE IN! 🚨

Here is the winning design, submitted anonymously, that will grace this year’s International Batten Disease Awareness Day T-shirts! THANK YOU to each of the 20 participants who submitted a design this year and the 260 who cast a vote.

Stay tuned for more information on when T-shirts will be available for purchase as well as news and events leading up to Batten Awareness Day on June 9!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy

CONFERENCE REGISTRATION IS OPEN!

🚨 CONFERENCE REGISTRATION IS OPEN! 🚨

Oh, and we have our theme! 🌽🧬 Register to attend the BDSRA Annual Family Conference in Lincoln, Nebraska this July. You can also reserve your hotel room(s) and apply for a conference grant. Come sow hope for a cure with us. LINK IN BIO!

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

FINAL CALL FOR VOTING

🚨🚨 FINAL CALL FOR VOTING 🚨🚨

We’ve narrowed the Batten Awareness Day T-Shirt Design Contest to three finalists! Cast your vote (one vote per person) to help determine the winner! The winner will be announced this week. LINK IN BIO!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Contest #Vote

ONE WEEK AWAY: Bereaved Batten parents are invited

ONE WEEK AWAY: Bereaved Batten parents are invited to attend next Sunday’s Grief Chat. You only need to complete the registration form once and you will receive a Zoom link that will work for all future Grief Chats and email reminders before each scheduled Grief Chat. LINK IN BIO!

#BattenAdvocatesForACure #BattenDisease #BDSRA #Grief #Support #LifeGoesOn #BereavedParents

TIME IS RUNNING OUT TO VOTE

🚨 TIME IS RUNNING OUT TO VOTE 🚨

Cast your vote for one of our three finalists to determine the 2025 International Batten Disease Awareness Day T-shirt. The winner will be announced this upcoming week. LINK IN BIO!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Contest #Vote

From breaking global news to video production and

From breaking global news to video production and social posts, The Illuminator to weekly emails, website updates and so much more, Patrick has been advocating for our Batten community for THREE years. His talent is limitless, and we are the beneficiaries. Please share in the celebration of Patrick with us and all he does to keep us in the know, raising funds, and promoting awareness of Batten disease. We couldn't do it without him!🎉3️⃣🤩

#BattenAdvocatesForACure #3Anniversary #MarketingPro #BattenDisease #Marketing #SocialMedia

QUESTION: Which design do YOU like the most? Cast

QUESTION: Which design do YOU like the most? Cast your vote TODAY and help determine the winning design for this year’s Batten Awareness Day T-shirt. Voting is limited to one per person. LINK IN BIO!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Contest #Vote

IT’S TIME TO VOTE!

IT’S TIME TO VOTE! 🗳️🗳️

Cast your vote for this year’s International Batten Disease Awareness Day T-shirt design from our three finalists! You may vote only ONCE! Voting is open until 11:59 PM EDT this Sunday. LINK IN BIO!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Contest #Vote

OUR NEWSLETTER IS OUT!

Go to your email

🚨 OUR NEWSLETTER IS OUT! 🚨

Go to your email and read up on the latest news on Batten disease research, advocacy, and resources. Sign up for our email list to receive future newsletters and important updates from BDSRA. LINK IN BIO!

#BattenAdvocatesForACure #BattenDisease #BDSRA #RareDisease #January #Newsletter

We are TWO WEEKS away from the Conference Grant ap

We are TWO WEEKS away from the Conference Grant application deadline! U.S. and Canadian families may apply for a grant to attend the 2025 Annual Family Conference in Lincoln, Nebraska by the April 14 deadline. LINK IN BIO! Priority will be given to families who haven’t received any funding in the past for the conference, are a first-time attendee, or have been unable to attend for several years due to financial stress.

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

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