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    • 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
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    • Clinical Trials & Natural History Studies Chart
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    • Advocacy Toolkit
    • Rare Disease Week
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    • Illuminator Newsletter
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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
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    • Illuminator Newsletter
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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.

REMINDER: The Grief Chat is this Sunday at 7 PM ED REMINDER: The Grief Chat is this Sunday at 7 PM EDT! This virtual chat is open to all bereaved Batten parents. These chats provide an opportunity for bereaved parents to gather, support one another, and share their experiences, regardless of where they are in their grief journey. First-time attendees MUST register. LINK IN BIO!

#Grief #chat #BattenAdvocatesForACure #BattenDisease #bereavement #parents
Can you believe it’s already been a month since Can you believe it’s already been a month since the Annual Family Conference in Nebraska? What was your favorite part of this year’s Conference? Let us know in the comments below!! Click the link in our bio to view the full Conference Photo Gallery produced by @iragrahamiiiphotography!

#BattenAdvocatesForACure #BDSRAconference2025 #nebraska #BattenDisease #conference #RareDisease
🚨 NCL2025 SESSIONS ANNOUNCED! 🚨 The NCL2025 🚨 NCL2025 SESSIONS ANNOUNCED! 🚨

The NCL2025 International Congress will bring together the brightest minds in Batten disease research and care. With 80+ presentations over 5 days, you can now check out the session titles and Program At A Glance!

Don’t miss out! Register today ➡ https://www.ncl2025.org/
We’re less than a week away from the next virtua We’re less than a week away from the next virtual Grief Chat for bereaved Batten parents. If you’re attending for the first time, please complete the registration form. After you complete the form, you’ll receive email reminders for all upcoming Grief Chats and the Zoom link to join. LINK IN BIO!

#Grief #chat #BattenAdvocatesForACure #BattenDisease #bereavement #parents
Our Board of Directors makes a difference for the Our Board of Directors makes a difference for the Batten community. Are you ready to make an impact? Apply to join the Board of Directors by August 31! Visit the application to see the full description and qualifications. LINK IN BIO!

#BattenAdvocatesForACure #boardofdirectors #battendisease #apply #raredisease
🚨 SUNDAY, AUGUST 17, AT 7 PM EDT 🚨 As part 🚨 SUNDAY, AUGUST 17, AT 7 PM EDT 🚨

As part of our Life Goes On program, we invite any bereaved Batten parents to join us for the upcoming virtual Grief Chat. These chats provide an opportunity for bereaved parents to gather, support one another, and share their experiences, regardless of where they are in their grief journey. First-time attendees MUST register. LINK IN BIO!

#Grief #chat #BattenAdvocatesForACure #BattenDisease #bereavement #parents
By signing up for our email list, you’ll be kept By signing up for our email list, you’ll be kept up to date! We send a monthly newsletter and important emails regarding updates on Batten disease research, clinical trials, advocacy, and upcoming events. Signing up is easy! Sign up today by clicking the link in our bio. 

#BattenAdvocatesForACure #emaillist #updates #BattenDisease #RareDisease
It's hard to believe that a year has gone by since It's hard to believe that a year has gone by since Heather Dainiak joined the BDSRA Foundation team, and yet she's been with us all along! Heather is uniquely experienced to serve the families of North America, and often, around the world. As a Batten parent, now bereaved, who is also raising a SIB, experienced a clinical trial, and co-founded Our Promise to Nicholas Foundation, families can ask her just about anything!  Please join us in thanking Heather for her work as Director of Family Support. 🎉👨‍👩‍👧‍👦1️⃣ 

#WorkAnniversary #OneYear #BattenDisease #BattenDisease #BattenAdvocatesForACure
CHECK YOUR EMAIL TOMORROW! 💻✉️ Our July new CHECK YOUR EMAIL TOMORROW! 💻✉️ Our July newsletter will be sent to you Friday morning! This edition of The Illuminator features an Annual Family Conference recap, Board of Directors updates, details on an upcoming event, and more. Sign up for our email list to receive our newsletter and important updates. LINK IN BIO!

#TheIlluminator #Newsletter #Read #BattenAdvocatesForACure #BattenDisease #fyp
🚨 PROGRAMMING UPDATE 🚨 Grief Chats return i 🚨 PROGRAMMING UPDATE 🚨

Grief Chats return in August! The next Grief Chat for bereaved Batten parents is scheduled for Sunday, August 17, at 7 PM EDT. This is a time for bereaved parents to gather and support themselves and fellow bereaved parents, no matter where they are in their grief journey. First-time attendees MUST register. Link in bio!

#Grief #chat #BattenAdvocatesForACure #BattenDisease #bereavement #parents
🧬 CENTERS OF EXCELLENCE 🧬 The Annual Family 🧬 CENTERS OF EXCELLENCE 🧬

The Annual Family Conference brought together many of our clinicians from the Batten Disease Clinical Centers of Excellence (CoEs) and Clinical Research Consortium (BDCRC) for a half-day meeting in Lincoln, Nebraska. Together, this national network of Centers aims to provide the highest level of comprehensive Batten-specific care, accelerate clinical research, and partner with the BDSRA Foundation to drive Batten disease education and advocacy. Learn more by clicking the link in our bio!

#BattenResearch #BattenDisease #clinical #centersofexcellence
🚨 BOARD ANNOUNCEMENTS 🚨 At the latest Board 🚨 BOARD ANNOUNCEMENTS 🚨

At the latest Board of Directors meeting in Lincoln, Nebraska, on July 10, the Board of Directors conducted leadership elections. The new board leadership, effective January 2026 (Treasurer role took effect immediately), is: 

Board Chair – Barbara McDonough 
Vice Chair – Suzette James 
Secretary – Gretchen Fieschko 
Treasurer – Wayne Kiefer 

Congratulations to all! YOU could become a member of the Board of Directors; applications are open and due by August 31. Apply today – LINK IN BIO!

#BattenAdvocatesForACure
🚨🚨 FINAL CALL 🚨🚨 TODAY is the final d 🚨🚨 FINAL CALL 🚨🚨

TODAY is the final day to complete our Post-Conference Surveys. LINK IN BIO! There are surveys to review the Overall Conference, Life Goes On program for bereaved parents, and Childcare. 

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp #surveys #bereavement #childcare
What’d you think of this year’s Annual Family What’d you think of this year’s Annual Family Conference in Lincoln, Nebraska? Complete one of our Post-Conference Surveys and give us your feedback. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp #surveys #bereavement #childcare
IT’S HERE! 📸 View the full photo gallery from IT’S HERE! 📸 View the full photo gallery from the 2025 Annual Family Conference - link in bio!

Thank you to @iragrahamiiiphotography for all his TREMENDOUS work!

#BattenAdvocatesForACure #BDSRAconference2025 #photogallery #BattenDisease #RareDisease #Nebraska #Conference #fyp
🚨 SURVEYS CLOSE THIS WEEK 🚨 LINK IN BIO! Yo 🚨 SURVEYS CLOSE THIS WEEK 🚨

LINK IN BIO! You have until this Friday to complete our Post-Conference Surveys! There are surveys to review the Overall Conference, Life Goes On program for bereaved parents, and Childcare. 

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp #surveys #bereavement #childcare
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