BDSRA Foundation@BDSRA

Batten Disease Support, Research, & Advocacy. Together, we are #BattenAdvocatesForACure. Donate here: ow.ly/PHs450Qkbl5

 Gahanna, Ohio
linktr.ee/bdsra
Joined August 2009
1,699 Photos and videos
BDSRA Foundation is accepting applications for our Board of Directors through October 15. We are seeking experience in SIBS leadership, law, special education, HR, IT, fund accounting, fundraising and marketing. Apply: ow.ly/hTEz50ZMOnf #BattenDisease #RareDisease

BDSRA Board Member Application Form

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Families living with Batten disease are the experts in their own experience. Kennedy Krieger Institute is inviting caregivers and affected adults to help shape how quality of life is measured. 15-30 min, online, open through December: ow.ly/3ZXQ50ZMOmt
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Carolina families: the Second Carolinas Batten Disease Family Day is Saturday September 19, 10am to 2pm in Chapel Hill. Free, lunch provided, hosted by the UNC Batten Disease Center of Excellence and Duke. RSVP: forms.fillout.com/t/vxhvWMLD… #BattenDisease #RareDisease
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An update from the BDSRA Board of Directors: the 2027 Family Conference, a new interim Family Support role, the strategic plan, and where we need your help. Board applications close October 15. ow.ly/yhhQ50ZMOkN

Update from the Board

Dear members of our Batten Community, We wanted to provide an update on the many board activities and initiatives in the last few months. The Tragic loss of Larry McDonough was a most saddening...

bdsrafoundation.org
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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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🚨 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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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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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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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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🚨 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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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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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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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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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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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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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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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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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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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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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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