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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
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    • Illuminator Newsletter
    • Press and Media
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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
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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.

Please join us in celebrating Noah's third year wi Please join us in celebrating Noah's third year with BDSRA! 🎉 Not only did Noah bring database experience to our team, but his life as a rare disease sibling and family member also brought a valuable perspective! Since then, Noah has been integral to the workings of the Centers of Excellence, Batten Disease Research Consortium, and the Batten Disease Global Research Initiative. We're grateful for his contributions to the Batten and BDSRA communities. 

#3Years #BattenAdvocatesForACure #BattenDisease #Data 🎆
TODAY AT 12 PM EST! ☕ Grab some coffee and have TODAY AT 12 PM EST! ☕

Grab some coffee and have a conversation with our Director of Family Support, Heather Dainiak! Today’s session will focus on feeling thankful for the little things in your Batten journey. Please email support@bdsrafoundation.org for any registration questions. View the full instructions by going to the link in our bio. 

#fyp #BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
SHARE THIS POST: The fourth quarter is here, and f SHARE THIS POST: The fourth quarter is here, and for most nonprofit organizations, this means the annual appeal. The BDSRA Foundation is no different, and we need your help (donate by clicking the link in our bio). 

This year has been a financial challenge for BDSRA. We want to continue to offer the trusted Batten-specific resources we’ve started:

▪️Host expert virtual programming
▪️Provide financial support for families
▪️Deliver a family conference packed with content
▪️Fund the best research around the globe
▪️Supply advocacy resources for every state and the nation

To plan and manage these offerings, we need the team, and we would be grateful if you could advocate for BDSRA. Whether you like, share, or comment on our social media, send emails to your friends or family, or promote BDSRA through your Fam Fund, we will accept the gift of your help!

Anyone can donate by clicking the link in our bio. Stay tuned for more ways to get involved!

#BattenAdvocatesForACure #battendisease #donate #give #annualappeal #raredisease
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. Friday’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 – 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 – 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: Don’t miss the next Coffee Chat wit NEXT FRIDAY: Don’t miss the next Coffee Chat with Heather Dainiak, BDSRA’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 you’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
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!
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