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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
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    • Our Board of Directors
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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
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    • International Partners
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The Latest BDSRA & Batten Disease Community Events and Updates

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  5. The Latest BDSRA & Batten Disease Community Events and Updates

The Latest BDSRA & Batten Disease Community Events and Updates

 

Included in this email update:

  • Batten Disease Global Research Initiative Update
  • The return of the International Batten Disease Awareness Day T-Shirt Design Contest
  • Conference Grant applications
  • Rare Disease Week Recap
  • Fam Funds Update
  • Newsletter Update

Read below to catch up on the latest news and events in the Batten disease community!

 

It’s Brain Awareness Week!

It’s Brain Awareness Week – a global campaign to foster public enthusiasm and support for brain science. Let’s take some time to learn more about the Batten Disease Global Research Initiative! Big news is coming soon! 👀

Visit the GRI Website

 

THE T-SHIRT DESIGN CONTEST IS BACK!

For the third straight year, we are holding another T-shirt contest to determine the design of this year’s International Batten Disease Awareness Day T-shirt! DEADLINE IS 11:59 PM EDT ON SUNDAY, MARCH 30.

View the complete rules and guidelines by clicking the button below.

Learn More

 

Conference Grants are available!

Conference grants are available to U.S. and Canadian families. Grants cover registration, one room for up to three nights, and meals on Friday and Saturday of the conference.

Attendees are responsible for their travel expenses.

The 2025 Annual Family Conference is taking place in Lincoln, Nebraska July 11-13.

Grant Application

 

Rare Disease Week Recap

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Batten grandfather Mitch Larson traveled to D.C. from Nebraska last week to participate in Rare Disease Week on Capitol Hill. Listen as he details his experience advocating for the Batten disease community.

Visit our website for more content from Rare Disease Week, and THANK YOU ALL for your relentless advocacy!

Full Recap

 

Fam Funds Update

As of last week, we are now up to 19 Fam Funds!

Welcome our newest Fam Funds and check out their pages! 💚 This initiative allows Batten families to share their stories and raise funds within their communities for a mission area of their choice.

Learn more and get started by clicking the button below!

Join Fam Funds

 

February Newsletter Update

The February edition of The Illuminator Newsletter will not be published. News and notes that would’ve appeared in that edition will be included in a combined February/March edition.

 
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By Patrick Kotnik|2025-03-10T14:05:58-04:00March 11th, 2025|Advocacy, Latest News, Research News|Comments Off on The Latest BDSRA & Batten Disease Community Events and Updates

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