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Social MediaTom Evans2025-01-09T17:31:41-05:00

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SUPPORT + RESEARCH + ADVOCACY. We are #BattenAdvocatesForACure. Click the link below for news, events, and how to donate.

Marketing & PR Coordinator, Cheesehead, Mountainee

Marketing & PR Coordinator, Cheesehead, Mountaineer, Family, Friend...no matter what you call him, shout out Patrick on his birthday in the comments! BDSRA and the global Batten community are lucky to call him an Advocate, and we thank him for keeping the mission front and center in everyone's minds. Happy Birthday, PK, and many more returns! 🎂🎉🎈

🚨 FAM FUNDS UPDATE 🚨 We’re almost halfway

🚨 FAM FUNDS UPDATE 🚨

We’re almost halfway to our goal of 50 Fam Funds by June 9’s International Batten Disease Awareness Day. Our 22 Fam Funds have raised over $25,000! Tell your story, let us assist you with a community fundraiser/event, and raise awareness of Batten disease. Get started today. LINK IN BIO!

#BattenAdvocatesForACure #Awareness #Advocacy #BattenDisease #Fundraise #RareDisease #Money

Today is International Bereaved Mother’s Day. We

Today is International Bereaved Mother’s Day. We send our love, support, and thoughts to all the bereaved mothers in our Batten disease community. We’re here for you no matter where you are on your journeys with Batten and grief, and we hope you continue to treasure your love for and memories of your Batten angel(s). 💛

#BereavedMothersDay #BattenAdvocatesForACure #BattenDisease #Grief #Support #RareDisease

Who DOESN’T love purchasing a new T-shirt? You c

Who DOESN’T love purchasing a new T-shirt? You can right now by visiting the main International Batten Disease Awareness Day home page and grabbing the official 2025 Batten Awareness Day T-shirt (LINK IN BIO)!

Register for the Virtual 5K on June 9 to get your shirt or purchase it separately. Funds raised will go towards the BDSRA Foundation's greatest need(s). If you're raising funds for this specific fundraiser through your Fam Fund, you may choose where your donations are directed.

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Cure #RareDisease

WE HAVE REACHED $10,000! How soon can we reach $2

WE HAVE REACHED $10,000!

How soon can we reach $20,000?? SHARE this post with family, friends, colleagues, etc., and encourage them to purchase a T-shirt before the 11th, register for the Virtual 5K, donate, and more. LINK IN BIO!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Cure #RareDisease

APRIL NEWSLETTER: Go to your email and read the la

APRIL NEWSLETTER: Go to your email and read the latest news on Batten disease research, Batten Awareness Day on June 9, and the upcoming Annual Family Conference in July. Sign up for our email list to receive future newsletters and important updates from BDSRA. LINK IN BIO!

#BattenAdvocatesForACure #BattenDisease #BDSRA #RareDisease #April #Newsletter

EXCITING things are happening in Batten disease re

EXCITING things are happening in Batten disease research! The recipients of the Batten Disease Global Research Initiative (BDGRI) inaugural Research Grant round were announced on March 18. Learn more about the recipients and their research projects by clicking the LINK IN OUR BIO! 🧬

#BattenResearch #BDGRI #BattenDisease #Science #Research #ClinicalResearch #NCL #CLN #RareDisease

🚨 CLN3 DISEASE GENE THERAPY UPDATE 🚨 Alcyo

🚨 CLN3 DISEASE GENE THERAPY UPDATE 🚨

Alcyone Therapeutics has announced strategic financing to advance therapeutic candidate “CLN-301” in an expanded collaboration with Nationwide Children’s Hospital, Columbus, OH.

Formerly licensed to Amicus Therapeutics before being returned to Nationwide in January 2024, the investigational gene therapy has been in Phase 1/2 clinical trial since 2018, with four individuals treated and now followed for over five years (ClinicalTrials.gov Identifier NCT03770572).

Read more about this and Alcyone's announcement by clicking the LINK IN OUR BIO!

#BattenDisease #Research #Science #Clinical #RareDisease #CLN #NCL

Ready to kickstart your spring garden and/or satis

Ready to kickstart your spring garden and/or satisfy your sweet tooth?

Thanks to Fam Funds, you can purchase flowers and candy from the links below to raise funds for BDSRA. Hurry, because the last day of the Bloom Shop fundraiser is May 15. The See’s Candies fundraiser is open year-round. LINKS IN BIO!

#FamFunds #Candy #Flowers #BattenDisease #BattenAdvocatesForACure #RareDisease #Giving

The BDSRA Foundation supports Batten families of A

The BDSRA Foundation supports Batten families of ALL CLN types. By donating to BDSRA and helping us raise funds, you are making a difference for Batten families battling this devastating disease that has no cure. Join us in raising awareness and funds leading up to Batten Disease Awareness Day on June 9 by helping us reach our $100,000 goal (LINK IN BIO).

🏃‍♀️ Register for the Batten Awareness Day Virtual 5K (June 9)
💻 Create your own fundraising page to rally your community
👕 Order T-shirts
💬 Share & raise awareness—because NO ONE battles Batten disease alone.

Funds raised will go towards the BDSRA Foundation's greatest need(s). If you're raising funds for this specific fundraiser through your Fam Fund, you may choose where your donations are directed.

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #FamFunds #Fundraise #RareDisease

We work daily to keep our Batten community informe

We work daily to keep our Batten community informed, and your $5 Friday donations ensure Batten families are kept up-to-date on resources, news, and upcoming events through weekly emails and our monthly newsletter. That’s the power of FIVE. Donate today by clicking the link in our bio!

#5dollarfridays #fundraising #BattenDisease #BattenAdvocatesForACure

The last Coffee Chat of April is TOMORROW! Join Ba

The last Coffee Chat of April is TOMORROW! Join Batten parent Heather Dainiak at noon EDT tomorrow. This month’s theme is, “The Weight of Change—Navigating Transitions Together.” These chats are open to parents and caregivers of all CLN types in the United States, Canada, and abroad. Complete the form once and you’re good to go for ALL future Coffee Chats. LINK IN BIO!

#BattenAdvocatesForACure #BattenDisease #Coffee #Chat #Support #Virtual

Research & clinical sessions, FREE childcare, acti

Research & clinical sessions, FREE childcare, activities for siblings and bereaved Batten parents, and more – the BDSRA Annual Family Conference has something for ALL Batten families. Join us in Lincoln, Nebraska this July by registering today. LINK IN BIO!

#BattenAdvocatesForACure #BDSRAconference2025 #BattenDisease #RareDisease #Nebraska #Conference

The Beedle, Becker, and Sims families have each en

The Beedle, Becker, and Sims families have each engaged their community through local events and fundraisers (LINK IN BIO to read). Our Fam Funds program helps turn your journey into a powerful force for change.

Your community wants to help—give them the opportunity! If you’re ready to launch a Fam Fund or participate in an upcoming event, please contact Beth Fries at beth@bdsrafoundation.org. Together, we can make a lasting impact—one story, event, and Fam Fund at a time.

#FamFunds #BattenAdvocatesForACure #Fundraiser #Donate #BattenDisease #RareDisease #Mission #Cure #Story #Event

TOMORROW NIGHT: Join Coffee Chats either tomorrow

TOMORROW NIGHT: Join Coffee Chats either tomorrow at 8 PM EDT or this Friday, April 25 at noon EDT. This month's theme for these chats is, “The Weight of Change—Navigating Transitions Together.” New attendees must register. If you’ve registered before, you will receive email reminders and the Zoom link for all Coffee Chats. LINK TO REGISTER IN BIO!

#BattenAdvocatesForACure #BattenDisease #Coffee #Chat #Support #Virtual

‼️IN CASE YOU MISSED IT‼️ The 2025 Batten

‼️IN CASE YOU MISSED IT‼️

The 2025 Batten Disease Awareness Day T-shirts are here! You can purchase them separately or while signing up for the Virtual 5K on June 9 and creating your own fundraising page. T-shirts are available to U.S. families only. LINK IN BIO!

#BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Cure #RareDisease

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