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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
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  • Memorials
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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.

TWO MORE DAYS: Our Coffee Chats are a safe space f TWO MORE DAYS: Our Coffee Chats are a safe space for parents and caregivers of all CLN types in the United States, Canada, and abroad. Fridayโ€™s session will focus on sharing the small moments that bring us gratitude, connection, and comfort, even in the midst of challenges. Learn more and register by clicking the link in our bio!

#fyp #BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
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
LINK IN BIO! The goal of our Community Needs Asses LINK IN BIO! The goal of our Community Needs Assessment 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. 

#fyp #BattenAdvocatesForACure #communityneeds #support #assessment #survey #battendisease #raredisease
BOARD TOWN HALL IS TODAY! Remember, there are two BOARD TOWN HALL IS TODAY!

Remember, there are two sessions โ€“ one at 7:00 PM EST and another at 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 - LINK IN BIO!

Want more programming like this? Click the link in our bio to give to BDSRA today.
Hey! We have some upcoming virtual events, includi Hey! We have some upcoming virtual events, including one tomorrow; YOU should register to attend them! Check them out by clicking the link in our bio. 

#BattenAdvocatesForACure #fyp
REMINDER: The first Board of Directors Virtual Tow REMINDER: The first Board of Directors Virtual Town Hall is THIS SUNDAY. There will be two sessions on Sunday โ€“ one at 7:00 PM EST and 7:00 PM PST. Get all the details by clicking the link in our bio!

Want more programming like this? Invest in our mission. Link in bio to donate!
NEXT FRIDAY: Donโ€™t miss the next Coffee Chat wit NEXT FRIDAY: Donโ€™t miss the next Coffee Chat with Heather Dainiak, BDSRAโ€™s Director of Family Support! This session will focus on sharing the small moments that bring us gratitude, connection, and comfort, even in the midst of challenges on your Batten journey. If youโ€™ve already completed the form, you should already have the Zoom link to join the session. LINK IN BIO!

#fyp #BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
Letโ€™s dive into some research and clinical updat Letโ€™s dive into some research and clinical updates!

LINK IN BIO! After attending the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL) and BDSRA Australiaโ€™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, youโ€™re the best. Youโ€™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! ๐Ÿ’œ๐Ÿ’› 

#NationalFamilyCaregiversMonth #BattenAdvocatesForACure #battendisease #raredisease #caregiver #advocacy #support
๐Ÿšจ ONE WEEK AWAY ๐Ÿšจ Do you have questions for ๐Ÿšจ ONE WEEK AWAY ๐Ÿšจ

Do you have questions for our Board of Directors? Well, hereโ€™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 โ€“ 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! ๐Ÿ—ฃ๏ธ LINK IN BIO! The 2025 WE NEED YOUR INPUT! ๐Ÿ—ฃ๏ธ

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.
Itโ€™s October 27th in Australia, so make sure you Itโ€™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! ๐ŸŽ‚๐ŸŽ‰๐ŸŽ

#BattenDisease #HappyBirthday #ScienceOfficer #BattenAdvocatesForACure
๐Ÿšจ TODAY AT 12 PM EDT ๐Ÿšจ LINK IN BIO! Join He ๐Ÿšจ TODAY AT 12 PM EDT ๐Ÿšจ

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 youโ€™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
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