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    • Types of Batten Disease
    • Symptoms and Diagnosis
  • Ways to Give
    • How to Give
    • Fundraiser Shops
    • 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
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    • Support for Batten Siblings
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    • Clinical Trials & Natural History Studies Chart
    • Family Register
    • Research and Clinical News
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    • Advocacy Toolkit
    • Rare Disease Week
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    • Illuminator Newsletter
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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
    • Fundraiser Shops
    • 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
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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.

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.
We’re making early progress! We’re nearing $30 We’re making early progress! We’re nearing $300 on the way to our $2,000 goal. Join the fight for treatments and a cure for Batten disease and help support and advocate for our affected families by donating to the BDSRA Foundation today. Link in bio!

#BattenAdvocatesForACure #givingTuesday #battendisease #donate #give #annualappeal #raredisease
Every gift brings us closer to a future where no f Every gift brings us closer to a future where no family faces Batten disease alone. When you give to the BDSRA Foundation, you make an impact on – Support, Research, Advocacy, and our Greatest Needs. With your help, we can expand family support, fund critical research, and amplify the voices of Batten families worldwide. Join the fight for treatments and a cure for Batten disease today! Click the link in our bio  to donate or send a check to:

BDSRA Foundation
PO Box 30049
Gahanna, OH 43230

#BattenAdvocatesForACure #givingtuesday #battendisease #donate #give #annualappeal #raredisease
🚨 TIME CHANGE: TONIGHT AT 8 PM EST 🚨 Join J 🚨 TIME CHANGE: TONIGHT AT 8 PM EST 🚨

Join Jamie Freedlund for a gentle conversation about finding balance between joy and sadness during the holiday season. You will explore ways to honor emotions, adjust traditions, and embrace connection in whatever form the holidays take. Register by clicking the link in our bio!

#BattenAdvocatesForACure #bdsra #battendisease #holidays #grief #joy #sadness #expert #raredisease
FINAL SURVEY CALL: The Community Needs Assessment FINAL SURVEY CALL: The Community Needs Assessment Survey closes at 11:59 PM EST TONIGHT! Click the link in our bio to complete it. 

#fyp #BattenAdvocatesForACure #communityneeds #support #assessment #survey #battendisease #raredisease
The holiday season can be especially difficult for The holiday season can be especially difficult for parents who’ve lost their child or children to Batten disease. If you’re 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. Click the link in our bio for details.
It's hard to believe the growth and change Linda h It's hard to believe the growth and change Linda has managed in the four years she has been with us. We are grateful for all she's done, and we are celebrating her work anniversary today! 🎊 Please join us in thanking her for her work on the Family Grants, the Conference, the many T-shirts she mails, and all the office needs. We're sending you the love, Linda! 💙

#HappyWorkAnniversary #4Years #BattenDisease #BattenAdvocatesForACure
ASK-AN-EXPERT REMINDER: Don’t forget!! The next ASK-AN-EXPERT REMINDER: Don’t forget!! The next Ask-An-Expert will take place this Monday, December 1, at 7:00 PM EST, featuring Jamie Freedlund. The rescheduled Ask-An-Expert, featuring Dr. Ineka Whiteman and Dr. Jonathan Cooper, will take place on Tuesday, December 9, at 7:00 p.m. EST. Learn more by clicking the link in our bio!

#BattenAdvocatesForACure #bdsra #battendisease #holidays #grief #joy #sadness #expert #raredisease

@matteasjoy
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