The BDSRA Foundation is thrilled to welcome Gretchen Fieschko to the Board of Directors! Gretchen joined the board for her first meeting earlier this month in Chicago. Learn more about Gretchen: #BattenAdvocatesForACure #BattenDisease #Support

BDSRA’s Life Goes On program invites bereaved Batten parents to our Grief Chat ONE WEEK from today on Sunday, Feb. 16 at 7 PM EST. This is a chance to connect with others who share your pain and understand the weight of your loss: #BattenDisease #Grief

Welcome our new Fam Funds! Together, we are sharing our unique stories, raising awareness, and supporting the mission of the BDSRA Foundation. We aim to have 50 Fam Funds participating by International Batten Disease Awareness Day on June 9, 2025:

Mark your calendars! The BDSRA Foundation’s Valentine’s Day Virtual Party is at 6:30 PM EST next Tuesday! Didn’t grab a party kit? No worries — you can still register and join! This event is open to all Batten children, adults, parents, and SIBs! 🎉❤️ 🔗

RT @Batten_PSDL: Thank you @bdsra for highlighting our work

RESEARCH UPDATES: Our Dr. Ineka Whiteman detailed two research highlights in her latest column, featuring @Batten_PSDL and @MCRI_for_kids: #BattenAdvocatesForACure #BattenDisease #Research #CLN2Disease #CLN3Disease #Speech #Language #Science @WUSTL

Last week’s Fam Funds info meeting is on our YouTube channel and can be watched on the Fam Funds home page. Learn more about Fam Funds and the impact you can make on the Batten community and the BDSRA Foundation by watching this presentation:

RT @RareDiseases: NORD’s #BattenDisease Patient Assistance Program, in partnership with @BDSRA, helps individuals with #Batten pay for heal…

🚨 FINAL CALL FOR PARTY KITS 🚨 Reserve your party kits for the Valentine’s Day Party next Tuesday, Feb. 11 by 11:59 PM EST TONIGHT! Or while supplies last. Don’t miss out on the fun next Tuesday 🎉💌 🔗 #BattenAdvocatesForACure #BDSRA #ValentinesDay

Join BDSRA’s Grief Chat on Sunday, February 16 at 7 PM EST to connect with others who understand your pain. As part of the Life Goes On program, this chat offers a space for healing, support, and connection for bereaved Batten parents:

🗣️ FINAL CALL 🗣️ We are offering $1,000 travel stipends to support members of the Batten community in attending Rare Disease Week in D.C. from Feb. 24-28. This is your chance to represent the Batten community on Capitol Hill and FDA-NIH Rare Disease Day:

Our first newsletter of 2025 hit your inboxes this morning! 📧 This issue is packed with research updates, information on upcoming events, and much more! Sign up for our email list to receive future newsletters and important updates from BDSRA:

NEW: BDSRA Foundation President & CEO Amy Fenton Parker is here with updates for the Batten community, including info on upcoming events, Annual Appeal results, and how you can be a #BattenAdvocateForACure. Visit our website for more information:

⏰ Hurry, time’s running out! Get your FREE Valentine’s Day party kit before the deadline — Monday, February 3 at 11:59 PM EST! Let’s craft, create, and celebrate Valentine’s Day on February 11! 🎉💘 🔗 #BattenAdvocatesForACure #BDSRA #ValentinesDay

TOMORROW: Join Beth Fries via Zoom for a Fam Funds information session This meeting will cover everything you need to know about Fam Funds and how to get set up with your own fundraiser. Register for the session here: #BattenAdvocatesForACure

On Sunday, February 16 at 7 PM EST, join our Grief Chat as part of BDSRA’s Life Goes On program. This is a safe space for parents who have lost a child to Batten disease to connect, share, and heal together. Please register if you didn't do so last year:

Happy Birthday to our Director of Family Support, Heather Dainiak! 🎂🎉 Heather’s dedication, kindness, and unwavering support make such a positive impact on the Batten community every day. We’re so grateful for what she does to support our families! 💖 #BattenAdvocatesForACure

Here’s a preview of the Valentine’s Day Party Kits! 👀 Reserve yours before Monday, February 3, or while supplies last, and join us for the party on Tuesday, February 11 at 6:30 PM EST! 🎉❤️ Kits are limited to U.S. and Canadian families only. 🔗

BDSRA is offering $1,000 travel stipends to help YOU attend Rare Disease Week in Washington, D.C., and FDA-NIH Rare Disease Day from Feb. 24-28. This is your chance to meet with lawmakers and fellow advocates and amplify community voices. Apply by Feb. 1:

A LOT is going on at the moment! Learn more about our upcoming events: Fam Funds: RDW Stipends: Valentine’s Day Party: Grief Chat: #BattenAdvocatesForACure