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2026 Annual Family Conference
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  • What Is Batten Disease?
    • What Is Batten Disease
    • Types of Batten Disease
    • Symptoms and Diagnosis
  • 2026 Conference
    • Main Page
    • Hotel Reservations
    • Grants
    • Volunteer Info
    • Become a Sponsor
  • Ways to Give
    • How to Give
    • Fam Funds
      • Interest Form
    • Donor Advised Fund Giving Form
  • Support
    • Centers of Excellence
    • Annual Family Conference
      • 2026 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
  • 2026 Conference
    • Main Page
    • Hotel Reservations
    • Grants
    • Volunteer Info
    • Become a Sponsor
  • Ways to Give
    • How to Give
    • Fam Funds
      • Interest Form
    • Donor Advised Fund Giving Form
  • Support
    • Centers of Excellence
    • Annual Family Conference
      • 2026 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

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Social MediaTom Evans2026-01-20T15:06:46-05:00

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

THEY. ARE. BACK. 👕🔥 “Love Hope Cure” T-shirts and THEY. ARE. BACK. 👕🔥

“Love Hope Cure” T-shirts and sweatshirts to celebrate International Batten Disease Awareness Day on June 9 are available for order! Browse different styles and colors, and order by May 5 to get it by June 9. LINK IN BIO!
🚨 TODAY AT 5 PM EDT 🚨 Join us for another Confere 🚨 TODAY AT 5 PM EDT 🚨

Join us for another Conference volunteer meeting! Please email heather@bdsrafoundation.org  if you haven’t received the Zoom link for the meeting. Learn more by clicking the link in our bio!

#BattenAdvocatesForACure #BDSRAconference2026 #battendisease #volunteer #conference #raredisease
You are not alone on your journey, and there are p You are not alone on your journey, and there are people here to help. 💛

Our monthly Coffee Chats are led by our Director of Family Support, Heather Dainiak. As a bereaved Batten parent, Heather is here to provide support and advice no matter where you are on your Batten disease journey. Join her this Thursday for a Coffee Chat. 

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
BOOK YOUR HOTEL ROOM(S) ➡️ Link in bio! The hotel BOOK YOUR HOTEL ROOM(S) ➡️ Link in bio!

The hotel room block is now open at the Westin Chicago Lombard for the 2026 BDSRA Annual Family Conference in Chicago!
Grief can move at different speeds, and it can be Grief can move at different speeds, and it can be especially hard when your path forward feels different from those around you. Join us in our next Virtual Grief Chat that’ll focus on Anticipatory Grief. Learn more and read the full registration details by clicking the link in our bio. 

#BattenAdvocatesForACure #grief #bereaved #parents #battendisease #community
The next virtual meeting for all Conference volunt The next virtual meeting for all Conference volunteers is THIS WEEK! Join us this Wednesday if you plan to attend the BDSRA Annual Family Conference in Chicago this July. Once you sign up for the volunteer email list, you will receive email reminders with the Zoom link to join these virtual volunteer meetings. Go to the link in our bio for details!

#BattenAdvocatesForACure #BDSRAconference2026 #battendisease #volunteer #conference #raredisease
Happy National Siblings Day! 💛🩵 The BDSRA Foundat Happy National Siblings Day! 💛🩵

The BDSRA Foundation’s Sibling (SIBs) program helps siblings of those diagnosed with Batten disease. Batten siblings of all ages can connect with others like themselves and foster lifelong friendships and countless memories through our SIBs program. 

SIBs gather at the BDSRA Annual Family Conference for offsite outings, panel discussions, grief chats, and more planned recreational and social activities. We hope to see all our Batten SIBs at July’s conference! Stay tuned for information on Conference registration and this year’s SIBs activities!

#NationalSiblingsDay #BattenAdvocatesForACure #BDSRAconference2026 #battendisease #siblings #conference #raredisease
When sleep is hard, everything can feel heavier. T When sleep is hard, everything can feel heavier. This month’s Coffee Chat is a space to connect with fellow Batten parents, share what your nights have been like, and talk openly about the challenges of rest while caring for your child. 

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
🚨 APPLY FOR A CONFERENCE GRANT 🚨 Grants include 🚨 APPLY FOR A CONFERENCE GRANT 🚨 

Grants include the price of registration, one room for up to three nights, and meals on Friday and Saturday of the 2026 BDSRA Annual Family Conference. Attendees are responsible for their travel expenses. 

#BattenAdvocatesForACure #BDSRAconference2026 #battendisease #grants #conference #raredisease
Do your summer plans involve joining us in Chicago Do your summer plans involve joining us in Chicago this July? If so, we could use your help!
We need Conference volunteers to help with our various committees! No prior experience is needed! Learn more and sign up for the volunteer email list. Link in bio!

#BattenAdvocatesForACure #BDSRAconference2026 #battendisease #volunteer #conference #raredisease
Unveiling the results of some of our recent fundra Unveiling the results of some of our recent fundraisers! 💚

Thank you to everyone who donated and/or participated! Your support of the Batten disease community and BDSRA doesn’t go unnoticed. Your support drives the organization and mission. Thank you for your advocacy. Thank you for being a Batten Advocate for a Cure. 💜

@officialpandaexpress 
@papercloudsapparel 

#BattenAdvocatesForACure #stpatricksday #loveisblind #pandaexpress #fundraiser #donate #battendisease #raredisease #awareness
The next BDSRA Virtual Grief Chat will focus on An The next BDSRA Virtual Grief Chat will focus on Anticipatory Grief. 

This space for our Batten disease community offers gentle support for sharing, reflecting, and moving forward while honoring your grief. Click the link in our bio to learn more. 

#BattenAdvocatesForACure #grief #bereaved #parents #battendisease #community
AVAILABLE NOW ➡️ The March edition of The Illumina AVAILABLE NOW ➡️ The March edition of The Illuminator Newsletter

If you’d like to receive our monthly newsletter along with Batten disease research updates, events, and conference news, please sign up for our email list. Link in bio!

#BattenAdvocatesForACure #newsletter #TheIlluminator #read #email #subscribe #battendisease #raredisease
Another month means another Coffee Chat! ☕ This mo Another month means another Coffee Chat! ☕ This month’s chat will focus on rest and sleep. 💤 Learn more about this session and register today by clicking the link in our bio!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
This isn’t an April Fool’s joke; the Conference Gr This isn’t an April Fool’s joke; the Conference Grant application is officially open!

We have a limited number of Conference Grants for families affected by Batten disease based in the United States. Priority is given to families who have not received funding in the past for the conference, new families, and those who have been unable to attend for several years due to financial stress. 

#BattenAdvocatesForACure #BDSRAconference2026 #battendisease #volunteer #conference #raredisease
Mark your calendars! 🗓️ Here’s what to look out fo Mark your calendars! 🗓️ Here’s what to look out for this month. Click the link in our bio for details!

#BattenAdvocatesForACure BDSRAconference2026 #chicago #coffee #chat #grief
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