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  • What Is Batten Disease?
    • What Is Batten Disease
    • Types of Batten Disease
    • Symptoms and Diagnosis
  • Ways to Give
    • How to Give
    • Fam Funds
      • Interest Form
    • Donor Advised Fund Giving Form
  • Support
    • Centers of Excellence
    • Annual Family Conference
      • 2025 BDSRA Annual Family Conference
    • Caregiver Resources
    • Newly Diagnosed?
    • Family Grants
    • Family and Caregiver Support
      • Parenting and Finding Emotional Support
      • Parents and Family Members as Caregivers
      • Bereaved Parents and Caregivers
      • Nuts and Bolts of Care
      • Educational Resources
    • Support for Batten Siblings
    • Join the BDSRA Community
    • Resource Corner
  • Research
    • Global Research Initiative
      • Researcher Email List
    • Current Funded Projects
    • Centers of Excellence
    • Clinical Trials & Natural History Studies Chart
    • Family Register
    • Research and Clinical News
  • Advocacy
    • 2025 International Batten Disease Awareness Day Toolkit
    • Advocacy Toolkit
    • Rare Disease Week
    • State and Local Initiatives
    • Hometown Efforts
  • News
    • Illuminator Newsletter
    • Press and Media
    • Social Media
    • Events
  • Memorials
  • About
    • History and Mission
    • Our Staff
    • Our Board of Directors
    • Investors
    • Financials and Reporting
    • International Partners
  • Contact
  • What Is Batten Disease?
    • What Is Batten Disease
    • Types of Batten Disease
    • Symptoms and Diagnosis
  • Ways to Give
    • How to Give
    • Fam Funds
      • Interest Form
    • Donor Advised Fund Giving Form
  • Support
    • Centers of Excellence
    • Annual Family Conference
      • 2025 BDSRA Annual Family Conference
    • Caregiver Resources
    • Newly Diagnosed?
    • Family Grants
    • Family and Caregiver Support
      • Parenting and Finding Emotional Support
      • Parents and Family Members as Caregivers
      • Bereaved Parents and Caregivers
      • Nuts and Bolts of Care
      • Educational Resources
    • Support for Batten Siblings
    • Join the BDSRA Community
    • Resource Corner
  • Research
    • Global Research Initiative
      • Researcher Email List
    • Current Funded Projects
    • Centers of Excellence
    • Clinical Trials & Natural History Studies Chart
    • Family Register
    • Research and Clinical News
  • Advocacy
    • 2025 International Batten Disease Awareness Day Toolkit
    • Advocacy Toolkit
    • Rare Disease Week
    • State and Local Initiatives
    • Hometown Efforts
  • News
    • Illuminator Newsletter
    • Press and Media
    • Social Media
    • Events
  • Memorials
  • About
    • History and Mission
    • Our Staff
    • Our Board of Directors
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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.

TONIGHT AT 7 PM EST! If you’re a bereaved Batte TONIGHT AT 7 PM EST!

If you’re a bereaved Batten parent, we encourage you to join tonight’s Holiday Grief Chat. If you’re navigating the holidays with both love and loss, you’re not alone. Join us tonight for a peer-to-peer support as we support one another with kindness, compassion, and understanding. Learn more by clicking the link in our bio. 

#BattenAdvocatesForACure #grief #loss #support #battendisease #holidays
Rise and shine! There’s a Coffee Chat TODAY! ☕ Rise and shine! There’s a Coffee Chat TODAY! ☕

Today’s session with our Director of Family Support, Heather Dainiak, will focus on the complexity of feeling both joy and sorrow, sharing ways to honor your child and your journey, and leaning on each other when words feel hard. Click the link in our bio to learn more and to register!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
The holiday season can stir up so many emotions wh The holiday season can stir up so many emotions when you’re grieving a child or children. This Sunday, we’re creating a gentle space to talk about giving ourselves permission — permission to rest, to say no, to celebrate in our own way, and to welcome small moments of joy without guilt. Learn more about this Sunday’s Holiday Grief Chat for bereaved Batten parents by clicking the link in our bio. 

#BattenAdvocatesForACure #grief #loss #support #battendisease #holidays
REMINDER: Coffee Chat is THIS FRIDAY! ☕

If you’ve already completed the registration form, you don’t need to again, and you will receive email reminders with the same Zoom link to join. First-time attendees must complete the registration form. Link in bio!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
Check your email! Our Holiday newsletter is hittin Check your email! Our Holiday newsletter is hitting your inbox now! 🎄❄️ Remember, you can receive our monthly newsletter, The Illuminator, and updates on important events and announcements by signing up for our email list. LINK IN BIO!

#TheIlluminator #Newsletter #Read #BattenAdvocatesForACure #BattenDisease #fyp
JOIN US TONIGHT! Learn about research and clinica JOIN US TONIGHT!

Learn about research and clinical updates from NCL Congress and the BDSRA Australia Family Conference! Dr. Ineka Whiteman and Dr. Jonathan Cooper will recap the events, share updates, and answer your questions. Learn more and register by clicking the LINK IN OUR BIO!

@bdsra_australia

#fyp #BattenAdvocatesForACure #bdsra #battendisease #research #clincial #expert #raredisease
The Holiday Grief Chat is ONE WEEK AWAY!

If you’re a bereaved Batten parent who’s navigating the holidays with both love and loss, you’re not alone. Join us for the Dec. 14 Holiday Grief Chat for a peer-to-peer support as we support one another with kindness, compassion, and understanding. Learn more and register by clicking the link in our bio. 

#BattenAdvocatesForACure #grief #loss #support #battendisease #holidays
LOTS going on this week! Click the link in our bio LOTS going on this week! Click the link in our bio to check out these virtual events!!

#BattenAdvocatesForACure #holidays #happyholidays #grief #coffee #expert #battendisease #raredisease
ONE WEEK FROM TODAY: Coffee Chat!! ☕

Next week’s session will focus on the complexity of feeling both joy and sorrow, sharing ways to honor your child and your journey, and leaning on each other when words feel hard. Go to the link in our bio to learn more and to register. 

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
🍬 FINAL CALL 🍬 We have partnered with @sees 🍬 FINAL CALL 🍬

We have partnered with @seescandies this holiday season! 

🌟20% of all sales are donated directly to the BDSRA Foundation to support families affected by Batten disease, including funding for family support, research, and community programs.

🍫 If you’re planning to buy sweet treats for your family, friends, teachers, or coworkers, consider shopping through our See’s Candy fundraiser. Every purchase makes a difference!

🛍️ Shop now through December 5th. LINK IN BIO!
NEXT WEEK: Get ready for a recap of NCL Congress a NEXT WEEK: Get ready for a recap of NCL Congress and the BDSRA Australia Family Conference! Dr. Ineka Whiteman and Dr. Jonathan Cooper will recap the events, share updates, and answer your questions. 

@bdsra_australia
More positive news for our CLN2 community this wee More positive news for our CLN2 community this week, with Tern Therapeutics announcing that its investigational gene therapy, TTX-381, for the treatment of ocular manifestations of CLN2 disease, has been selected by the FDA to participate in the Chemistry, Manufacturing and Controls (CMC) Development and Readiness Pilot (CDRP) Program. TTX-381 already holds Regenerative Medicine Advance Therapeutics (RMAT) and Fast Track designations, and this new selection will help Tern work closely with the FDA to speed manufacturing readiness and support earlier patient access.
DEADLINE IS THIS FRIDAY! We have partnered with @ DEADLINE IS THIS FRIDAY!

We have partnered with @seescandies this holiday season! 

🌟20% of all sales are donated directly to the BDSRA Foundation to support families affected by Batten disease, including funding for family support, research, and community programs.

🍫 If you’re planning to buy sweet treats for your family, friends, teachers, or coworkers, consider shopping through our See’s Candy fundraiser. Every purchase makes a difference!

🛍️ Shop now through December 5th. LINK IN BIO!
THANK YOU! 💚 Whether you donated, shared our p THANK YOU! 💚

Whether you donated, shared our posts, spread the word, etc., you helped make a difference for the Batten disease community by helping us surpass our $2,000 Giving Tuesday goal. Thanks to you, our Annual Appeal campaign is off to a hot start. Let’s keep it going! Make an impact on Batten disease Support, Research, and Advocacy today by donating to the BDSRA Foundation. Link in bio!

#BattenAdvocatesForACure #givingTuesday #battendisease #donate #give #annualappeal #raredisease
WOW!!! 🥹 And just like that, we have surpassed WOW!!! 🥹

And just like that, we have surpassed our $2,000 goal! Our community and donors are wonderful, and we can’t thank you all enough for your gifts and for spreading awareness. Batten disease is a brutal, rare disease in both children and adults that has no cure. Batten families need your support, and research and advocacy opportunities need funding. YOU can help make a difference by donating to the BDSRA Foundation today on Giving Tuesday and continuing the momentum. Donate today by clicking the link in our bio!

#BattenAdvocatesForACure #givingTuesday #battendisease #donate #give #annualappeal #raredisease
NEW: Latus Bio announced an update for LTS-101, a NEW: Latus Bio announced an update for LTS-101, a gene therapy candidate that’s intended to treat the CNS manifestations of CLN2 disease. Read the full press release from Latus Bio by clicking the link in our bio.
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