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
    • 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
    • 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
    • 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.

Grief Chat is TONIGHT! (register by clicking the l Grief Chat is TONIGHT! (register by clicking the link in our bio)

The fall season can be a challenging time for bereaved parents, as children return to school and the absence of Halloween and other fall traditions is noticeable. We are here to listen. Join our next Grief Chat TONIGHT, at 7:00 PM EDT on Zoom.

If you’ve already completed the form, you should already have the Zoom link. Please email support@bdsrafoundation.org with any questions. 

#Grief #chat #BattenAdvocatesForACure #BattenDisease #bereavement #parents
✅ Ask questions ✅ Learn the latest news You c ✅ Ask questions
✅ Learn the latest news

You can do these two things at the Board of Directors Virtual Town Hall on Sunday, November 9! There will be sessions – one at 7:00 PM EST and another at 7:00 PM PST. Please complete the form, and you will receive the Zoom link for all Board Town Halls. LINK IN BIO!

Want more programming like this? Invest in our mission by clicking the link in our bio!
Need to chat? We got you! Join our Director of Fa Need to chat? We got you!

Join our Director of Family Support, Heather Dainiak, for a Coffee Chat next Friday, October 24, at 12 PM EDT. This session will be an open space for families to exchange tips on navigating the cold and flu season while also finding simple, joyful ways to celebrate fall and Halloween with your loved one(s) with Batten. LINK IN BIO!

If you’ve completed the form, you should already have the Zoom link to join. Please email support@bdsrafoundation.org with any questions. 

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
‼️EVENT REMINDER‼️(link in bio) Our next ‼️EVENT REMINDER‼️(link in bio)

Our next Grief Chat for bereaved Batten parents, hosted by bereaved Batten parents, is THIS SUNDAY, OCTOBER 19, AT 7:00 PM EDT. We are here to listen, no matter where you are on your grief journey. 

If you’ve already completed the form, you should already have the Zoom link. You will also receive email reminders. Please email support@bdsrafoundation.org with any questions.
🚨🚨 HAPPENING TONIGHT 🚨🚨 Join us on Zo 🚨🚨 HAPPENING TONIGHT 🚨🚨

Join us on Zoom at 6 PM EDT for Ask-An-Expert, featuring Director of Enable Savings Plan, Stacy Pfeifer. It's not too late to register! Complete the registration form, and you will receive the Zoom link to join the session in a confirmation email. Learn more about Stacy and register by visiting the link in our bio.
REGISTER TODAY! (link in bio) Ask-An-Expert, feat REGISTER TODAY! (link in bio)

Ask-An-Expert, featuring the Director of Enable Savings Plan Stacy Pfeifer, is TOMORROW! Please complete the registration form, and you will receive the Zoom link to join the session in a confirmation email. Learn more about Stacy and register by clicking the link in our bio!
REGISTER TODAY! LINK IN BIO! Virtual events begin REGISTER TODAY! LINK IN BIO!

Virtual events begin this week with our "Ask-An-Expert" session. Browse our virtual events and follow the registration instructions. 

#BattenAdvocatesForACure #BattenDisease #support #virtual #finance #grief #chat #raredisease #townhall
One week from today ⬇️⬇️ LINK IN BIO! Our One week from today ⬇️⬇️

LINK IN BIO! Our Grief Chat, hosted by bereaved Batten parents, will take place virtually on Sunday, October 19, at 7:00 PM EDT. This session’s topic will focus on how you can navigate seasons and seasons’ traditions as a bereaved Batten parent. 

If you’ve already completed the form, you should already have the Zoom link. You will also receive email reminders. Please email support@bdsrafoundation.org with any questions. 

#Grief #chat #BattenAdvocatesForACure #BattenDisease #bereavement #parents
LOTS of virtual programming is on the way! No matt LOTS of virtual programming is on the way! No matter where you are on your Batten journey, feel free to explore our upcoming events. LINK IN BIO!
🚨 TV SHOW MENTION 🚨 Batten disease was feat 🚨 TV SHOW MENTION 🚨

Batten disease was featured in Thursday night’s new @nbc Law and Order episode titled “White Lies.” The scene that first mentions Batten disease begins at the 28:38 mark. This episode is part of Season 25 of the show, Episode No. 3, and is streaming on @Peacock!

Support and advocate for our Batten families by donating today - LINK IN BIO!

#BattenAdvocatesForACure #nbc #peacock #lawandorder #BattenDisease
Let’s have Coffee and chat! ☕ Meet Heather Da Let’s have Coffee and chat! ☕

Meet Heather Dainiak! Heather is BDSRA’s Director of Family Support. As a bereaved Batten mother to Nicholas, Heather knows the challenges families face caring for a loved one(s) with Batten disease and the bereavement process. Her experience can help you during your Batten journey, so feel free to join Heather for a Coffee Chat on Friday, October 24, at 12 PM EDT. Read the full registration info. LINK IN BIO!

#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
The fall season can be a challenging time for bere The fall season can be a challenging time for bereaved parents, as children return to school and the absence of Halloween and other fall traditions is noticeable. We are here to listen. Join our next Grief Chat on Sunday, October 19, at 7:00 PM EDT on Zoom (read the registration instructions by clicking the link in our bio).

If you’ve already completed the form, you should already have the Zoom link. You will also receive email reminders. Please email support@bdsrafoundation.org with any questions. 

#Grief #chat #BattenAdvocatesForACure #BattenDisease #bereavement #parents
🚨 ONE WEEK AWAY! 🚨 Meet Stacy Pfeifer, Dire 🚨 ONE WEEK AWAY! 🚨

Meet Stacy Pfeifer, Director of Enable Savings Plan, and next week’s Ask-An-Expert featured speaker. Stacy has been with the Nebraska State Treasurer's Office for 13 years and the Director of Enable for 3 ½ years. Stacy educates individuals about Enable accounts through presentations and resource fairs.

#BattenAdvocatesForACure #askanexpert #enablesavingsplan #virtual #battendisease #raredisease
Financial advice, Grief support, Q&As, and more ➡️ LOTS going on, and we’re here to support your Batten journey in any way we can!

Sign up for any of our upcoming virtual events. Click the link in our bio and then go to the "Upcoming Events" section.
TWO WEEKS FROM TODAY: Join the next BDSRA Grief Ch TWO WEEKS FROM TODAY: Join the next BDSRA Grief Chat for bereaved Batten parents, hosted by bereaved Batten parents. This session’s topic is: Navigating Seasons After Loss. Complete the registration form today to receive the Zoom link to join this upcoming chat and all future Grief Chats. LINK IN BIO!
Our September newsletter will hit your inboxes TOM Our September newsletter will hit your inboxes TOMORROW MORNING! Learn more about our upcoming virtual events and the latest advocacy, research, and conference news. Sign up for our email list today. LINK IN BIO!
Follow us on Instagram

Facebook Feed

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

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

Page load link
entT
Go to Top