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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
    • Financials and Reporting
    • International Partners
  • Contact
  • 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
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Social MediaTom Evans2025-01-09T17:31:41-05:00

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BDSRA Foundation

bdsra

SUPPORT + RESEARCH + ADVOCACY. We are #BattenAdvocatesForACure. Click the link below for news, events, and how to donate.

Happy 4th! Our office is closed today. Stay tuned Happy 4th! Our office is closed today. Stay tuned for more info on our availability next week ahead of the Annual Family Conference in Nebraska. 

#Happy4th #4thofJuly #BattenAdvocatesForACure
Who’s set to arrive in Nebraska exactly ONE WEEK Who’s set to arrive in Nebraska exactly ONE WEEK from today? If so, we have some important reminders! See you soon! Register today by clicking the link in our bio. 

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #Orientation #Coffee #Grief #Conference #fyp
Welcome, Annual Family Conference Bronze Sponsors: Welcome, Annual Family Conference Bronze Sponsors: @ethans_reason, NY/NJ BDSRA Chapter, @ramblcpediatricmedicalgroup, and @raresisters.batten! Thank you for your contribution and for helping make the Conference possible! Learn more and register to join us in Nebraska, July 11-13. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
Meet our Speakers & Presenters for the 2025 Annual Meet our Speakers & Presenters for the 2025 Annual Family Conference in Lincoln, Nebraska! The Conference is NEXT WEEK, but it’s not too late to join us. View the full list of speakers, the agenda, and register today. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #Orientation #Coffee #Grief #Conference #fyp
We have another PACKED edition of our monthly news We have another PACKED edition of our monthly newsletter, The Illuminator! The June edition, sent to your inbox this morning, includes conference reminders, research & clinical updates, advocacy opportunities, and more. 

Sign up for our email list to receive our newsletter and important updates. LINK IN BIO!

#TheIlluminator #Newsletter #Read #BattenAdvocatesForACure #BattenDisease #fyp
Welcome, Annual Family Conference Bronze Sponsors, Welcome, Annual Family Conference Bronze Sponsors, @boystownhospital, JCR Pharmaceuticals, @kennedykriegerinstitute, and Tern Therapeutics! Thank you for your contribution and for helping make the Conference possible! Learn more and register to join us in Nebraska, July 11-13. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
🚨🚨 FUNDRAISING TOTAL ALERT 🚨🚨 A big T 🚨🚨 FUNDRAISING TOTAL ALERT 🚨🚨

A big THANK YOU to all of our donors, Fam Funds, families who hosted fundraising events, and everyone who shared our posts and advocated through our International Batten Disease Awareness Day activities! Your continued gifts, support, and advocacy are crucial so that BDSRA can continue to provide support to families in need, source research for treatments and cures, and advocate for families' healthcare access and equity. With your continued support, we will accomplish this. Give today by clicking the link in our bio!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Cure #RareDisease #FYP
TODAY is the deadline to reserve rooms in the hote TODAY is the deadline to reserve rooms in the hotel block for the Annual Family Conference in Lincoln, Nebraska, from July 11-13.  Click the link in our bio to reserve your rooms, register, view the agenda, and more!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #Orientation #Coffee #Grief #Conference #fyp
Welcome, Annual Family Conference Gold Sponsor, @o Welcome, Annual Family Conference Gold Sponsor, @ourpromisetonicholasfoundation, and Silver Sponsor, Noah’s Hope/Hope 4 Bridget! Thank you for your contribution and for helping make the Conference possible! Learn more and register to join us in Nebraska, July 11-13, by clicking the link in our bio!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
Happy birthday to BDSRA President & CEO, Amy Fento Happy birthday to BDSRA President & CEO, Amy Fenton Parker! 🎉🎈🎂 We're grateful for her tireless work, leadership, and unwavering commitment to our Batten disease community every day. Wish Amy a happy birthday in the comments below! You can meet Amy and the rest of the BDSRA staff at next month’s Annual Family Conference. 

#HappyBirthday #BattenAdvocatesForACure #BattenDisease #Conference
Honor and remember our Batten Angels with us on Su Honor and remember our Batten Angels with us on Sunday morning at the Conference Memorial Service. Learn more about Memorial profiles and the Service. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
Thank you to our Platinum Sponsors for the Annual Thank you to our Platinum Sponsors for the Annual Family Conference: @biomarinpharmaceutical and @beyondbatten! Thank you for your contribution and for helping make the Conference possible! Learn more and register to join us in Nebraska, July 11-13, by clicking the link in our bio!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
Breakout groups by CLN type for parents, grandpare Breakout groups by CLN type for parents, grandparents, and siblings will be available at the Annual Family Conference in Nebraska. Register today, and join us in Lincoln. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
🚨 FINAL REMINDER 🚨 LINK IN BIO! The last Co 🚨 FINAL REMINDER 🚨

LINK IN BIO! The last Coffee Chat of the month will take place tomorrow at noon EDT. This month’s discussion will center around “When Summer Feels Overwhelming Navigating the End of the School Year.” Register once, and you will receive email reminders and the Zoom link to join any future Coffee Chats. 

#BattenAdvocatesForACure #Coffee #Chat #BattenDisease #Support #Summer #fyp
Thank you, @haleysheroesfoundation, for your Bronz Thank you, @haleysheroesfoundation, for your Bronze sponsorship for next month’s Annual Family Conference! This sponsorship is going towards the cost of childcare at the Conference. 

Interested in sponsoring and/or attending next month’s Conference in Lincoln, Nebraska? Get all your Conference info here by clicking the link in our bio!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
Stay tuned for some Music Therapy at the Annual Fa Stay tuned for some Music Therapy at the Annual Family Conference in Nebraska! The session will be open to all Batten children and adults, as well as siblings. Discover Music Therapy and its impact this summer by registering today. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference #fyp
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