BDSRA Foundation

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

🧬 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

Our February edition of The Illuminator Newsletter is out NOW! Catch up on Rare Disease Week news, Batten disease research updates, fundraisers, and much more! Sign up for our email list to receive our monthly newsletter and the latest Batten disease news: ow.ly/OTxK50YpObc

Some days may feel heavier than others during our Batten disease journeys. Join the next monthly Coffee Chat as we share simple tools, honest experiences, and support to help navigate the hard moments: ow.ly/XkkW50Yna3m #BattenAdvocatesForACure

TOMORROW, MARCH 4, is the deadline to order from the “Love is Blind” Braille collection. Paper Clouds Apparel will donate 50% of profits to the BDSRA Foundation. This collection features the word “Love” Brailled by Daxx, who has CLN3 Batten disease: ow.ly/GqT950Yn2ju

Check out this month’s events and mark your calendars! 📆 🏙️ Conference Volunteers: ow.ly/pRGf50Yn1Xi ☕ Coffee Chat: ow.ly/9pgP50Yn1Xq 🍬 See’s Candies Fundraiser: ow.ly/M1y050Yn1Xh #BattenAdvocatesForACure

We are honored to be named a #BattenDisease Center of Excellence “Affiliate Center” by @BDSRA. This recognition strengthens our commitment to providing care for children living with rare neurological conditions. bit.ly/4aof03Y #RareDiseaseDay #EquityForRare

IT’S RARE DISEASE WEEK! 🦓 Want to get involved? Visit our website to see all the different ways you can help the Batten disease community and BDSRA, whether it’s fundraising, raising awareness, advocating, or more: ow.ly/1cGh50Yj57z #BattenAdvocatesForACure

Joining us in Chicago for the Conference July 10-12? We need volunteer help for our various conference committees! No prior experience is needed. Visit our website for more details and email heather@bdsrafoundation.org if you’re interested: ow.ly/rYg050YhSVG

SHOP NOW: Paper Clouds Apparel will donate 50% of profits from “Love is Blind” Braille collection to the BDSRA Foundation. This collection features the word “Love” Brailled by Daxx, who has CLN3 Batten disease: ow.ly/9eaF50YhSRC #BattenAdvocatesForACure

Get to know the newest Affiliate Center in the Batten Disease Clinical Centers of Excellence Program! ⬇️

The first BDSRA newsletter of 2026 is waiting in your inbox! 📧 This edition features research news, upcoming events, fundraising opportunities, and more! Sign up for our email list to receive our newsletter and the latest Batten disease news: ow.ly/8lfQ50Y8Wro

‼️Breaking News: Rare Pediatric Disease PRV Program Reauthorized by Congress! After a two-year campaign to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program, the rare disease community’s relentless advocacy has paid off. Congress has passed the Labor, HHS, and Related Agencies Appropriations bill, effectively reauthorizing the PRV Program for five years while also funding a number of other critical healthcare agencies. We applaud the reauthorization of the PRV Program and renewed investments in critical health research and public health programs. Thank you to the congressional champions who have partnered with our rare disease community to secure these advances. While significant work remains to enable all those living with rare diseases to thrive, today’s progress will accelerate innovation, expand access to life-changing therapies, and offer renewed hope to children and families whose futures once seemed beyond reach. To learn more about the full healthcare package, please visit our website: everylifefoundation.org/congress-passe…

New month, new virtual events! 📆 If you’ve previously registered for any of these events, you’ll receive email reminders for that event. Learn more below! Coffee Chat: ow.ly/6AkC50Y6AUI Board Townhall: ow.ly/4l6A50Y6AUO Grief Chat: ow.ly/C4Vn50Y6AUJ

NEW: BDSRA Foundation announces @BoysTownHosp as the newest site in the Batten Disease Clinical Center of Excellence Program and the promotion of @nyulangone and @UNC_Health_Care (@UNCneurology) from Affiliate Centers to Centers of Excellence: ow.ly/QgzH50Y5peg

TONIGHT AT 6 PM EST! Join members of the BDSRA staff for a practical, beginner-friendly conversation about fundraising, designed to support Batten disease families and community members looking to learn where to start. Register: ow.ly/433G50XTEQA #BattenAdvocatesForACure

There are TWO virtual events taking place TOMORROW for our Batten disease community! Learn more by clicking below. Ask-An-Expert: ow.ly/ulvU50XUp62 CLN7 Update: ow.ly/jgMW50XUp61 #BattenAdvocatesForACure #battendisease #cln7 #battenresearch #askanexpert

NEXT WEEK ⬇️ Join members of the BDSRA staff for a practical, beginner-friendly conversation about fundraising, designed to support Batten disease families and community members looking to learn where to start. Register: ow.ly/433G50XTEQA #BattenAdvocatesForACure

An important update regarding the future of the BDSRA Foundation: #BattenAdvocatesForACure

Here’s a look back at some of the Annual Family Conference themes over the past four years! Have ideas for this year’s conference theme? 🤔💡 Drop them in the comments below! #BattenAdvocatesForACure #BDSRAconference2026 #battendisease #chicago #illinois #raredisease