Skip to content
<
Batten Disease Support & Research Association Logo Batten Disease Support & Research Association Logo
$5 Fridays
DONATE
SIGN UP FOR OUR EMAIL LIST
  • What Is Batten Disease?
    • What Is Batten Disease
    • Types of Batten Disease
    • Symptoms and Diagnosis
  • Ways to Give
    • How to Give
    • Fam Funds
      • Interest Form
    • 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
    • How to Give
    • Fam Funds
      • Interest Form
    • 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
    • How to Give
    • Fam Funds
      • Interest Form
    • 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

Social Media

  1. Home
  2. Social Media
Social MediaTom Evans2025-01-09T17:31:41-05:00

Instagram Feed

bdsra

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

NEW JANUARY EVENT ⬇️ Join members of the BDSRA st NEW JANUARY EVENT ⬇️

Join members of the BDSRA staff for a practical, beginner-friendly conversation about fundraising, designed to support Batten disease families and community members looking to learn where to start. Register today by clicking the link in our bio!
Elpida Therapeutics invites you to join a Zoom mee Elpida Therapeutics invites you to join a Zoom meeting on Jan. 21 for a special community update on the progress toward a therapy for CLN7 disease. This is an opportunity to hear directly from the Elpida team about the work of bringing new treatment options to patients and families.
☕ FIRST VIRTUAL EVENT OF THE NEW YEAR ☕ There wil ☕ FIRST VIRTUAL EVENT OF THE NEW YEAR ☕

There will be TWO Coffee Chats this month, hosted by our Director of Family Support, Heather Dainiak! This month’s chats are a space to pause, breathe, and reflect on the small lights that carry us through the winter months—connection, hope, and one another. Learn more by clicking the link in our bio!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
The BDSRA Foundation is proud to welcome four new The BDSRA Foundation is proud to welcome four new members to its Board of Directors! Their terms began on January 1, 2026. Click the link in our bio to learn more about the newest board members.
We need your ideas!! If you haven’t already, mark We need your ideas!! If you haven’t already, mark your calendars for the 2026 Annual Family Conference for July 10-12 at the Westin Chicago Lombard! As you await further info, what do YOU think this year’s Conference theme should be? Last year’s was “Sowing Hope for a Cure,” utilizing Nebraska’s state nickname as the “Cornhusker State.” Drop your ideas in the comments below!

#BattenAdvocatesForACure #BDSRAconference2026 #battendisease #chicago #illinois #raredisease
Mark your calendars and kick off 2026 by learning Mark your calendars and kick off 2026 by learning more about our upcoming events! More events and info will be available soon. 📆

#BattenAdvocatesForACure #battendisease #2026 #events #coffee #expert #research
Happy New Year, Batten community! 🩵🎆 We hope 2026 Happy New Year, Batten community! 🩵🎆 We hope 2026 is everything you want it to be and more. Our office will be closed today, but we will resume regular office hours on Friday, January 2. Together, we are #BattenAdvocatesForACure!
As a bereaved Batten father, Chris Hawkins gives b As a bereaved Batten father, Chris Hawkins gives back to the Batten disease community by assisting with BDSRA’s virtual Grief Chats. Your donations to BDSRA make our virtual programming possible, providing much-needed support to both bereaved and actively caring families affected by Batten disease. Your support means families aren’t alone in battling this devastating disease. Join Chris in the fight for treatments and a cure for Batten disease. Donate to BDSRA today by clicking the link in our bio!
The BDSRA Foundation bids farewell to Darlene Roya The BDSRA Foundation bids farewell to Darlene Royalty and Fern Leal-Pardinas, who served on the Board of Directors. BDSRA Board and Staff are grateful for their service, and we hope to keep them close in the Batten community. Read more about their impact on the Batten disease community by going to our website at bdsrafoundation.org. 

#BattenAdvocatesForACure
The BDSRA Annual Family Conference is a haven for The BDSRA Annual Family Conference is a haven for our Batten disease community. It’s where lifelong bonds and friendships are formed and where crucial information is learned. Your gifts to the BDSRA Foundation make the Annual Family Conference possible, so Batten families like Mitch’s won’t be alone on their Batten journey. Join our Batten families in the fight for treatments and a cure for Batten disease by donating to BDSRA. LINK IN BIO!
We wish a joyful Kwanzaa to our Batten disease com We wish a joyful Kwanzaa to our Batten disease community! 🕯️ We hope this Kwanzaa brings love and resilience to all who celebrate. 💛

#BattenAdvocatesForACure
Wishing our Batten disease community a Merry Chris Wishing our Batten disease community a Merry Christmas! May your holidays be filled with endless joy and cherished moments with loved ones. 🎄💚❤️

#BattenAdvocatesForACure
There are LOTS of ways to give to the BDSRA Founda There are LOTS of ways to give to the BDSRA Foundation and support Batten families and Batten disease research during this holiday season. Check them all out by clicking the link in our bio!

#BattenAdvocatesForACure #battendisease #donate #give #annualappeal #raredisease
Happy Holidays, Batten community! We’ll be closed Happy Holidays, Batten community! We’ll be closed on Christmas Eve and Christmas. We wish everyone a happy and safe holiday! ❄️❤️

#BattenAdvocatesForACure
“If every single person on the planet knew about w “If every single person on the planet knew about what Batten disease was doing to kids, I think there'd be a cure by now.”

Supporting fellow Batten families and finding a cure for Batten disease are why Terry and Stacy Thoene, parents of Oliver, who has CLN2 Batten disease, raise funds for BDSRA through the Fam Funds program. You can support the Thoene family’s fundraiser and many others by visiting the Fam Funds page. LINK IN BIO!

Join our Batten families in the fight for treatments and a cure for Batten disease. Donate to BDSRA today by clicking the link in our bio!
“I am forever grateful to BDSRA for the support, t “I am forever grateful to BDSRA for the support, the connection, and the guidance that’s given to families like mine in the hardest time of our lives.”

Life came to a screeching halt for Kristin Robar and her family after her son’s Batten disease diagnosis. Since then, she’s created two businesses to raise awareness, education, and funds for the BDSRA Foundation for Batten disease research. Listen to Kristin’s story and join her in this fight for treatments and a cure for Batten disease. Donate today by clicking the link in our bio!

@cl3anfreakhealth
Follow us on Instagram

Facebook Feed

PO Box 30049
Gahanna, OH 43230
(800) 448-4570

Copyright © 2025 Batten Disease Support, Research, and Advocacy Foundation. | All Rights Reserved | Privacy Policy | Sitemap | Terms & Conditions

Page load link
entT
Go to Top