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    • Types of Batten Disease
    • Symptoms and Diagnosis
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      • Interest Form
    • Giving Guide
    • 2024 Annual Appeal
    • Donor Advised Fund Giving Form
  • Support
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    • Annual Family Conference
      • 2025 BDSRA Annual Family Conference
    • Caregiver Resources
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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
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    • Advocacy Toolkit
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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.

Publication of Dr. Ineka Whiteman's research colum Publication of Dr. Ineka Whiteman's research columns is switching from a monthly to a quarterly schedule, effective immediately. Her next column will be published this December. Read her latest column below and sign up for our email list to stay up to date on all important news and updates from BDSRA. LINK IN BIO!

#BattenAdvocatesForACure #science #research #battenresearch #battendisease #update
EVENT: You’re invited to the First Carolinas Bat EVENT: You’re invited to the First Carolinas Batten Disease Family Day! 

Taking place in Chapel Hill, NC, on September 20, this event will feature connection, learning, and support tailored for families, patients, siblings, and professionals dedicated to Batten disease care. RSVP BY THIS SUNDAY, SEPT. 14!

Learn more: LINK IN BIO!
Let’s have some coffee and chat! ☕🗣️ Joi Let’s have some coffee and chat! ☕🗣️

Join BDSRA Director of Family Support, Heather Dainiak, on Friday, September 26, at 12 PM EDT for the return of Coffee Chats! This session will feature fall updates and is open to anyone in the Batten disease community. Read the full registration instructions by clicking the link in our bio!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
🚨🚨 2026 CONFERENCE NEWS 🚨🚨 As our con 🚨🚨 2026 CONFERENCE NEWS 🚨🚨

As our conference attendees found out during July’s conference and our email subscribers last week, WE ARE HEADED TO CHICAGO FOR THE 2026 ANNUAL FAMILY CONFERENCE!! More information will be announced when available, but for now, save the dates and subscribe to our email list for updates. Link in bio!
REMINDER: Expressions of Interest for the 2025-26 REMINDER: Expressions of Interest for the 2025-26 BDGRI Grant Round are due on SEPTEMBER 30!

Let’s look back at our grant winners from the inaugural grant round! Visit the BDGRI website to learn more about this current grant round and the inaugural winners. Go to https://battenresearch.org/ or click the link in our bio!

#BattenDisease #battenresearch #science #research #clincial #grants #raredisease
AUGUST NEWSLETTER: This edition of The Illuminator AUGUST NEWSLETTER: This edition of The Illuminator features MAJOR news about the 2026 Annual Family Conference, programming updates, advocacy opportunities, and more! Subscribe to our email list to receive our monthly newsletter and important updates. LINK IN BIO!

#TheIlluminator #Newsletter #Read #BattenAdvocatesForACure #BattenDisease #fyp
🚨🚨 UPCOMING EVENT 🚨🚨 Coffee Chats ret 🚨🚨 UPCOMING EVENT 🚨🚨

Coffee Chats return this month!! Join our Director of Family Support, Heather Dainiak, on September 26 at 12 PM EDT on Zoom. These chats are a safe space for parents and caregivers of all CLN types in the United States, Canada, and abroad. Once you complete the registration form, you will receive email reminders and the Zoom link for all future Coffee Chats. LINK IN BIO!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
September is Newborn Screening Awareness Month. Ne September is Newborn Screening Awareness Month. Newborn screening (NBS) is widely recognized as one of the largest and most successful disease prevention programs in U.S. history. The Department of Health and Human Services required an FDA-approved treatment or cure for inclusion on the Recommended Uniform Screening Panel (RUSP); therefore, only CLN2 (Brineura) would qualify. 
 
Although CLN2 isn’t on the RUSP, we continue to advocate for its inclusion and for NBS and RUSP alignment legislation to enable early intervention and help save lives. Watch for opportunities to get CLN2 on the NBS Panel in your state. 
 
Visit the @everylifeorg website to learn more. Link in bio!
Our office is CLOSED today in recognition of Labor Our office is CLOSED today in recognition of Labor Day. We will return to the office on Tuesday!

#BattenAdvocatesForACure #LaborDay
🚨🚨 FINAL CALL 🚨🚨 Sunday, August 31, i 🚨🚨 FINAL CALL 🚨🚨

Sunday, August 31, is the last day you can apply to join the BDSRA Board of Directors! Please read the full description and desired qualifications and complete the application by clicking the link in our bio!

#BattenAdvocatesForACure #boardofdirectors #battendisease #apply #raredisease
Today is National Grief Awareness Day, a day to ra Today is National Grief Awareness Day, a day to raise awareness of the grieving process, encourage open communication about loss, and provide support for those experiencing grief. Grief looks and feels different for everyone, but no matter how you grieve or where you’re at in your grief journey, the BDSRA Foundation remains in your corner. If you're a bereaved Batten parent, please consider signing up for our Grief Chat email list and get notified of our future Grief Chats. Link in bio. 

#NationalGriefAwarenessDay #BattenAdvocatesForACure #battendisease #grief #support #raredisease
🚨 CALLING ALL RESEARCHERS! 🚨 Applications a 🚨 CALLING ALL RESEARCHERS! 🚨

Applications are now open for the 2025-26 BDGRI Grant Round. We invite Expressions of Interest from researchers globally working in Batten disease or a related field. For details on eligibility and how to apply, please visit our website: https://battenresearch.org/ (or click the link in our bio)

⏰ Deadline for EOI applications is SEPTEMBER 30, 2025

#BattenDisease #battenresearch #science #research #clincial #grants #raredisease
The Batten disease community is family 💛❤️💜

Re-live the Pre-Conference Thursday of this year’s Annual Family Conference in Lincoln, Nebraska, by watching this video produced by @iragrahamiiiphotography!
🚨 DEADLINE THIS SUNDAY 🚨 You have until thi 🚨 DEADLINE THIS SUNDAY 🚨

You have until this Sunday to submit your application to join the BDSRA Board of Directors! Please read the full description and desired qualifications by clicking the LINK IN OUR BIO!

#BattenAdvocatesForACure #boardofdirectors #battendisease #apply #raredisease
ACTION ALERT: Tell your member of Congress to rene ACTION ALERT: Tell your member of Congress to renew the PRV program by passing the Give Kids a Chance Act of 2025 (H.R. 1262/S.932). LINK IN BIO!

SHARE THIS POST!

At the end of 2024, the Rare Pediatric Disease Priority Review Voucher (PRV) program expired. This critical program has enabled more than 50 therapies to reach children with rare diseases by incentivizing private-sector investment in high-risk research at no cost to taxpayers. There is still an opportunity to reauthorize the PRV Program (post copy from @everylifeorg). 

#BattenAdvocatesForACure #advocacy #battendisease #raredisease #takeaction
Whether it’s bereaved Batten families, actively Whether it’s bereaved Batten families, actively caring Batten families, Batten siblings, or working behind the scenes, our Board of Directors helps make an impact everywhere in the Batten disease community. Apply to become a member by THIS SUNDAY, AUGUST 31. Link in bio!
 
#BattenAdvocatesForACure #boardofdirectors #battendisease #apply #raredisease
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