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  • What Is Batten Disease?
    • What Is Batten Disease
    • Types of Batten Disease
    • Symptoms and Diagnosis
  • Ways to Give
    • Fundraiser Shops
    • Fam Funds
      • Interest Form
    • Giving Guide
    • 2024 Annual Appeal
    • 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
    • Fundraiser Shops
    • Fam Funds
      • Interest Form
    • Giving Guide
    • 2024 Annual Appeal
    • 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
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    • History and Mission
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Social MediaTom Evans2025-01-09T17:31:41-05:00

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bdsra

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

Let’s dive into some research and clinical updat Let’s dive into some research and clinical updates!

LINK IN BIO! After attending the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL) and BDSRA Australia’s Family Conference, BDSRA Head of Research & Medical Affairs, Ineka Whiteman, PhD, and Jonathan Cooper, PhD, of Washington University in St. Louis, will recap the events, share updates, and answer your questions. 

@bdsra_australia
November is National Family Caregivers Month! To a November is National Family Caregivers Month! To all our amazing family caregivers in the Batten disease community, you’re the best. You’re doing great, and we admire you each day. Take time to thank a caregiver today and recognize them in the comments below! Thank you for all that you do! 💜💛 

#NationalFamilyCaregiversMonth #BattenAdvocatesForACure #battendisease #raredisease #caregiver #advocacy #support
🚨 ONE WEEK AWAY 🚨 Do you have questions for 🚨 ONE WEEK AWAY 🚨

Do you have questions for our Board of Directors? Well, here’s your opportunity to ask! Join our board members for the first quarterly Board of Directors Virtual Town Hall next Sunday, November 9. There will be two sessions – one at 7:00 PM EST and another at 7:00 PM PST. Read the full registration instructions by clicking the link in our bio!

Want more programming like this? Invest in our mission. Link in bio!

#BattenAdvocatesForACure #board #townhall #battendisease #meeting #virtual #questions #support
A hot cup of coffee on a chilly fall morning is on A hot cup of coffee on a chilly fall morning is one of the little things to enjoy this time of year. Make it even more enjoyable with a conversation with our Director of Family Support, Heather Dainiak! Join Heather for another Coffee Chat on Friday, Nov. 14, at 12 PM EST and share the small moments that bring us gratitude, connection, and comfort, even in the midst of challenges. LINK IN BIO!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
UPCOMING: The BDSRA Board of Directors will hold i UPCOMING: The BDSRA Board of Directors will hold its first quarterly Virtual Town Hall via Zoom on Sunday, November 9, at 7:00 PM EST and 7:00 PM PST. Once you complete the form, you will receive the Zoom link for the session that will work for all Town Halls. Learn more and register by going to the link in our bio!

Want more programming like this? Invest in our mission, link in bio!
Your support in 2024 planted seeds for further pro Your support in 2024 planted seeds for further progress in 2025 and beyond. 

Our 2024 Impact Report is available! It includes a letter from our President & CEO, and donation and grant summaries. Click the link in our bio to read!
WE NEED YOUR INPUT! 🗣️ LINK IN BIO! The 2025 WE NEED YOUR INPUT! 🗣️

LINK IN BIO! The 2025 Community Needs Assessment Survey is available now! The goal of this survey is to explore the needs of Batten families living around the world. 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.
It’s October 27th in Australia, so make sure you It’s October 27th in Australia, so make sure you wish Ineka a very Happy Birthday! Celebrating Ineka's birthday is a great way to start the NCL Congress in Australia! We are grateful for the gift of Ineka and the expertise she provides for our Batten community, whether it's meeting with a newly diagnosed family, an industry partner, researchers, or clinicians. We are glad she'll be surrounded by all those this week, and we wish her the best birthday yet! 🎂🎉🎁

#BattenDisease #HappyBirthday #ScienceOfficer #BattenAdvocatesForACure
🚨 TODAY AT 12 PM EDT 🚨 LINK IN BIO! Join He 🚨 TODAY AT 12 PM EDT 🚨

LINK IN BIO! Join Heather Dainiak for a Coffee Chat focused on exchanging tips on navigating the cold and flu season while also finding simple, joyful ways to celebrate fall and Halloween with your loved one(s) with Batten. 

If you’ve completed the form, you should already have the Zoom link to join. Please email support@bdsrafoundation.org with any questions. 

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
Virtual Town Halls with the BDSRA Foundation Board Virtual Town Halls with the BDSRA Foundation Board of Directors will be held quarterly. The first one is on Sunday, November 9, with two sessions – one at 7:00 PM EST and another at 7:00 PM PST. You can ask board members questions and stay informed about the latest news and events from BDSRA. Please complete the form, and you will receive the Zoom link for all Board Town Halls. LINK IN BIO!

Want more programming like this? Invest in our mission by clicking the link in our bio!
A busy month of virtual programming concludes this A busy month of virtual programming concludes this Friday with a Coffee Chat! ☕

If you need some time to chat with someone, no matter where you are in your Batten journey, our Director of Family Support, Heather Dainiak, has you covered! Join her this Friday, October 24, at 12 PM EDT. Read the full registration instructions by clicking the link in our bio!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
Grief Chat is TONIGHT! (register by clicking the l Grief Chat is TONIGHT! (register by clicking the link in our bio)

The fall season can be a challenging time for bereaved parents, as children return to school and the absence of Halloween and other fall traditions is noticeable. We are here to listen. Join our next Grief Chat TONIGHT, at 7:00 PM EDT on Zoom.

If you’ve already completed the form, you should already have the Zoom link. Please email support@bdsrafoundation.org with any questions. 

#Grief #chat #BattenAdvocatesForACure #BattenDisease #bereavement #parents
✅ Ask questions ✅ Learn the latest news You c ✅ Ask questions
✅ Learn the latest news

You can do these two things at the Board of Directors Virtual Town Hall on Sunday, November 9! There will be sessions – one at 7:00 PM EST and another at 7:00 PM PST. Please complete the form, and you will receive the Zoom link for all Board Town Halls. LINK IN BIO!

Want more programming like this? Invest in our mission by clicking the link in our bio!
Need to chat? We got you! Join our Director of Fa Need to chat? We got you!

Join our Director of Family Support, Heather Dainiak, for a Coffee Chat next Friday, October 24, at 12 PM EDT. This session will be an open space for families to exchange tips on navigating the cold and flu season while also finding simple, joyful ways to celebrate fall and Halloween with your loved one(s) with Batten. LINK IN BIO!

If you’ve completed the form, you should already have the Zoom link to join. Please email support@bdsrafoundation.org with any questions. 

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
‼️EVENT REMINDER‼️(link in bio) Our next ‼️EVENT REMINDER‼️(link in bio)

Our next Grief Chat for bereaved Batten parents, hosted by bereaved Batten parents, is THIS SUNDAY, OCTOBER 19, AT 7:00 PM EDT. We are here to listen, no matter where you are on your grief journey. 

If you’ve already completed the form, you should already have the Zoom link. You will also receive email reminders. Please email support@bdsrafoundation.org with any questions.
🚨🚨 HAPPENING TONIGHT 🚨🚨 Join us on Zo 🚨🚨 HAPPENING TONIGHT 🚨🚨

Join us on Zoom at 6 PM EDT for Ask-An-Expert, featuring Director of Enable Savings Plan, Stacy Pfeifer. It's not too late to register! Complete the registration form, and you will receive the Zoom link to join the session in a confirmation email. Learn more about Stacy and register by visiting the link in our bio.
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