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

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

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

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

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

🚨 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.

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

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

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

🚨 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

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

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

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

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. 💜

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

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

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

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

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

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