Batten Disease Support, Research, & Advocacy. Together, we are #BattenAdvocatesForACure. Donate here: ow.ly/PHs450Qkbl5
Joined August 2009
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May 16
LOTS to catch you up on ➡️ Read the latest BDSRA news in our newsletter!
Didn’t receive our newsletter this morning? Sign up today and receive The Illuminator monthly and be the first to know about the latest Batten disease and BDSRA news and events: ow.ly/61PG50Z0cOB
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May 13
🚨 REGISTRATION IS OPEN: ow.ly/hweT50YZ7gr
Join us in Chicago this July for the 2026 BDSRA Annual Family Conference! The Conference brings together domestic and international families affected by Batten disease, researchers, clinicians, and industry professionals.
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Apr 27
We’re looking ahead to some May flowers! Upcoming events and deadlines are blooming! 🌻🌻
Merch: ow.ly/PJ8450YPfnc
Coffee Chat: ow.ly/5jOI50YPfnf
Grants: ow.ly/royB50YPfng
Programming: ow.ly/CUHg50YPfne
#BattenAdvocatesForACure
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Apr 20
Be the first to know about Annual Family Conference updates by signing up for our email list! 👀
🔗 ow.ly/F4AJ50YFU0o
#BattenAdvocatesForACure #BDSRAconference2026 #battendisease #email #conference #raredisease
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Apr 15
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: ow.ly/1Fnw50YK5uQ
#battenday2026
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Apr 15
🚨 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: ow.ly/TUL550YzatL
#BattenAdvocatesForACure #BDSRAconference2026 #battendisease
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Apr 14
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 this Thursday for a Coffee Chat: ow.ly/8HcY50YyTjj
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Apr 13
BOOK YOUR HOTEL ROOM(S) ➡️ ow.ly/g5TO50YHhro
The hotel room block is now open at the Westin Chicago Lombard for the 2026 BDSRA Annual Family Conference in Chicago!
#BattenAdvocatesForACure #BDSRAconference2026 #battendisease
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Apr 7
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: ow.ly/JwsH50Yz9OF
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Apr 6
Unveiling the results of our 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 being a Batten Advocate for a Cure. 💜
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Apr 6
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: ow.ly/jTBI50YyV83
#BattenAdvocatesForACure #grief #battendisease
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Apr 3
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: ow.ly/aBLi50YCvl5
#BattenAdvocatesForACure
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Apr 2
Another month means another Coffee Chat! ☕ This month’s chat will focus on rest and sleep. 💤 Learn more about this session and register today: ow.ly/UbXK50YyT5Y
#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
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Mar 31
Mark your calendars! 🗓️ Here’s what to look out for this month:
Conference Volunteers: ow.ly/246n50YzkI6
Coffee Chat: ow.ly/9JAr50YzkI4
Grief Chat: ow.ly/bnRe50YzkI3
#BattenAdvocatesForACure BDSRAconference2026 #chicago #coffee #chat #grief
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Mar 30
We are still accepting volunteer help for this July’s BDSRA Annual Family Conference in Chicago! There are numerous committees you can join. No prior experience is needed! Learn more and sign up for the volunteer email list: ow.ly/kVpL50Yzg6x
#BattenAdvocatesForACure
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Mar 25
Your help is needed for this July’s BDSRA Annual Family Conference in Chicago!
Get involved with any of our various conference committees! No prior experience is needed. Learn more: ow.ly/ousm50YwSZr
#BattenAdvocatesForACure #BDSRAconference2026 #battendisease
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Mar 24
PRESS RELEASE: The BDSRA Foundation continues to expand access to expert Batten disease care with Children’s National Hospital in Washington, D.C., officially joining its Batten Disease Clinical Centers of Excellence Program as an Affiliate Center: ow.ly/MClC50YxOrJ
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Mar 23
By signing up for our email list, you’ll be kept up to date! We send a monthly newsletter, plus important Batten disease news, events, fundraisers, and more. Signing up is easy: ow.ly/9J6G50YwPYp
#BattenAdvocatesForACure
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Mar 20
GOOD MORNING, it’s Coffee Chat Day!!! ☕ See you at 12 PM EST!
Learn more and register: ow.ly/2Wfc50YqfpH
#BattenAdvocatesForACure #coffeechats #battendisease #raredisease #support #coffee #chat
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Mar 11
🧬 RESEARCH UPDATES 🧬
Read the latest Batten disease research and clinical updates from our Head of Research & Medical Affairs, Dr. Ineka Whiteman: ow.ly/h3Gs50YpR05
#BattenAdvocatesForACure #battendisease #research #battenresearch #ncl #raredisease #clinicalresearch
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