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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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  • News
    • 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
    • Social Media
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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.

‘Tis the season for some Holiday programming! Ch ‘Tis the season for some Holiday programming! Check out our upcoming virtual events by clicking the link in our bio! 

#BattenAdvocatesForACure #holidays #happyholidays #grief #coffee #expert #battendisease #raredisease
🎄 ‘Tis the Season 🎄 We are partnering wit 🎄 ‘Tis the Season 🎄

We are partnering 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!
‼️ SHARE ‼️ The BDSRA Foundation is proud ‼️ SHARE ‼️

The BDSRA Foundation is proud to celebrate Kennedy Krieger’s and the Batten Disease Clinical Research Consortium’s (BDCRC) recent NIH grant award, made possible by the dedication of an incredible team under the leadership of Dr. Erika Augustine & Dr. Ineka Whiteman. Ineka joined the BDSRA Foundation team in 2023, thanks to donor funding, and has led several Batten disease research and clinical programs. Your gift to BDSRA has a direct impact on the Batten community. Your gifts lead to stronger families, more connected communities, and real scientific progress. Join the fight for treatments and a cure for Batten disease by donating to the BDSRA Foundation. LINK IN BIO!

#BattenAdvocatesForACure #battendisease #donate #give #annualappeal #raredisease
What are your needs? What type of communication do What are your needs? What type of communication do you prefer? Let us know by completing the Community Needs Assessment! The goal of this survey is to explore the needs of Batten families worldwide so we can better understand and support our Batten community. 

#fyp #BattenAdvocatesForACure #communityneeds #support #assessment #survey #battendisease #raredisease
🚨 EVENT POSTPONED 🚨 The Ask-An-Expert sessi 🚨 EVENT POSTPONED 🚨

The Ask-An-Expert session originally scheduled for Tuesday, November 18, has been postponed. This virtual event will be rescheduled. Please follow our social media channels and keep an eye on your email for the rescheduled date. We appreciate your patience and flexibility while we determine a new date. Visit the event form by clicking the link in our bio!

#BattenAdvocatesForACure #bdsra #battendisease #research #clincial #expert #raredisease
🧬 RESEARCH UPDATES 🧬 Come ready with your r 🧬 RESEARCH UPDATES 🧬

Come ready with your research and clinical questions as Dr. Jonathan Cooper and Dr. Ineka Whiteman recap and share updates from NCL Congress and the BDSRA Australia Family Conference. Learn more and register by clicking the link in our bio!

@bdsra_australia

#fyp #BattenAdvocatesForACure #bdsra #battendisease #research #clincial #expert #raredisease
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
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