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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 Evans2026-01-20T15:06:46-05:00

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SUPPORT + RESEARCH + ADVOCACY. We are #BattenAdvocatesForACure. Click the link below for news, events, and how to donate.

We want to support you in any way we can. To do th We want to support you in any way we can. To do that, we need you to complete the Community Needs Assessment. The deadline has been extended to Sunday, February 1. More than 1 person per household may complete this survey; however, we ask that only patients, parents, guardians, and adults in a primary caregiving role complete this comprehensive survey. 

#BattenAdvocatesForACure
TONIGHT AT 6 PM EST ⬇️ Join BDSRA staff members f TONIGHT AT 6 PM EST ⬇️

Join BDSRA staff members for a practical, beginner-friendly conversation about fundraising, designed to support Batten disease families and community members looking to learn where to start. Register now by clicking the link in our bio!
There are TWO virtual events taking place TOMORROW There are TWO virtual events taking place TOMORROW for our Batten disease community! Learn more by clicking the link in our bio!

#BattenAdvocatesForACure #battendisease #cln7 #battenresearch #askanexpert #virtual #event #fundraising #raredisease
🤔🤔🤔 🤔🤔🤔
Good morning, Batten community! Let’s have some co Good morning, Batten community! Let’s have some coffee and chat today! ☕

Join our Director of Family Support, Heather Dainiak, today at 12 PM EST. All you have to do is complete the form once, and you will receive the link for all future Coffee Chats and email reminders. Learn more by clicking the link in our bio!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
NEXT WEEK ⬇️ Join members of the BDSRA staff for NEXT WEEK ⬇️

Join members of the BDSRA staff for a practical, beginner-friendly conversation about fundraising, designed to support Batten disease families and community members looking to learn where to start. Register today by clicking the link in our bio!
An important update regarding the future of the BD An important update regarding the future of the BDSRA Foundation:

#BattenAdvocatesForACure
Happy Birthday to the one who keeps us all in line Happy Birthday to the one who keeps us all in line — Linda! 🎉 Your organization, kindness, and steady leadership keep everything running smoothly, and we couldn't do it without you. Wishing you a fantastic year ahead filled with joy, health, and celebration. We’re so grateful for you!🎈💐

#BattenAdvocatesForACure #BattenDisease #HappyBirthday
🚨 TONIGHT AT 7 PM EST 🚨 The first of two Coffee C 🚨 TONIGHT AT 7 PM EST 🚨

The first of two Coffee Chats this month is TONIGHT! ☕☕ We hope to see you there! If not, see you this Friday! Get all the details by clicking the link in our bio!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
To all our Annual Appeal donors, your support mean To all our Annual Appeal donors, your support means more than we can fully express to the families affected by Batten disease. Your support helps families access vital resources, fuels research progress, and strengthens advocacy efforts nationwide. From the bottom of our hearts, we thank you. 💜

Although this fundraising campaign is wrapping up, funds are needed year-round. Every gift—no matter the size—moves our work forward. A gift today supports families right now and advances the search for treatments and cures. Give today by clicking the link in our bio!
Here’s a look back at some of the Annual Family Co Here’s a look back at some of the Annual Family Conference themes over the past four years! Have ideas for this year’s conference theme? 🤔💡 Drop them in the comments below!

#BattenAdvocatesForACure #BDSRAconference2026 #battendisease #chicago #illinois #raredisease
Need to talk? We’re here for you! ☕💛 TWO Coffee C Need to talk? We’re here for you! ☕💛

TWO Coffee Chats are coming up this week, hosted by our Director of Family Support, Heather Dainiak! This month’s chats are a space to pause, breathe, and reflect on the small lights that carry us through the winter months—connection, hope, and one another. Learn more by clicking the link in our bio!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
NEW JANUARY EVENT ⬇️ Join members of the BDSRA st NEW JANUARY EVENT ⬇️

Join members of the BDSRA staff for a practical, beginner-friendly conversation about fundraising, designed to support Batten disease families and community members looking to learn where to start. Register today by clicking the link in our bio!
Elpida Therapeutics invites you to join a Zoom mee Elpida Therapeutics invites you to join a Zoom meeting on Jan. 21 for a special community update on the progress toward a therapy for CLN7 disease. This is an opportunity to hear directly from the Elpida team about the work of bringing new treatment options to patients and families.
☕ FIRST VIRTUAL EVENT OF THE NEW YEAR ☕ There wil ☕ FIRST VIRTUAL EVENT OF THE NEW YEAR ☕

There will be TWO Coffee Chats this month, hosted by our Director of Family Support, Heather Dainiak! This month’s chats are a space to pause, breathe, and reflect on the small lights that carry us through the winter months—connection, hope, and one another. Learn more by clicking the link in our bio!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
The BDSRA Foundation is proud to welcome four new The BDSRA Foundation is proud to welcome four new members to its Board of Directors! Their terms began on January 1, 2026. Click the link in our bio to learn more about the newest board members.
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