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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.

Welcome our new Fam Funds! We have 11 Batten famil

Welcome our new Fam Funds! We have 11 Batten families signed up and ready to go! 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. Learn more by clicking the link in our bio!

#BattenAdvocatesForACure #FamFunds #BattenDisease #Fundraising #RareDisease #Donations

💌 Mark your calendars! The BDSRA Foundation’s

💌 Mark your calendars! The BDSRA Foundation’s Valentine’s Day Virtual Party is on February 11 at 6:30 PM EST! Didn’t grab a party kit? No worries — you can still register and join the fun! This event is open to all Batten children, adults, parents, and siblings! 🎉❤️ Link in bio!

#BattenAdvocatesForACure #BDSRA #ValentinesDay #Party #BattenDisease #BattenFamilies

RESEARCH UPDATES: Our Dr. Ineka Whiteman detailed

RESEARCH UPDATES: Our Dr. Ineka Whiteman detailed two research highlights in her latest column (link in bio).

The first highlight covers a new study led by Prof. Jonathan Cooper, Dr. Ewa Ziolkowska, and Matt Jansen at Washington University in St. Louis that may have uncovered why individuals with Batten disease often suffer from severe gastrointestinal issues.

The second highlight features new research on speech and language in CLN2 and CLN3 disease led by Prof. Angela Morgan and PhD candidate Lottie Morison at the Murdoch Children’s Research Institute (MCRI) in Melbourne, Australia.

@bdsra_australia @batten_psdl @WashU @mcri_speechlang @murdoch_childrens @unimelb @mdhsunimelb

#BattenAdvocatesForACure #BattenDisease #Research #BattenResearch #CLN2Disease #CLN3Disease #Speech #Language #Science

Last week’s Fam Funds information meeting is now

Last week’s Fam Funds information meeting is now 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 by Beth Fries. Link in bio!

#BattenAdvocatesForACure #FamFunds #BattenDisease #Fundraising #RareDisease #Donations

🚨 FINAL CALL FOR PARTY KITS 🚨 Reserve your

🚨 FINAL CALL FOR PARTY KITS 🚨

Reserve your party kits for the Valentine’s Day Party next Tuesday, February 11 by 11:59 PM EST TONIGHT! Or while supplies last. Don’t miss out on the fun next Tuesday 🎉💌 Link in bio!

#BattenAdvocatesForACure #BDSRA #ValentinesDay #Party #BattenDisease #BattenFamilies

Navigating grief after the loss of a child is neve

Navigating grief after the loss of a child is never easy. 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. Please register if you didn’t do so for a Grief Chat in 2024 by clicking the link in our bio.

Take a moment for yourself. You are not alone in this journey.

#BattenAdvocatesForACure #BattenDisease #BDSRA #Grief #Support #LifeGoesOn #BereavedParents

🗣️ FINAL CALL 🗣️ The BDSRA Foundation i

🗣️ FINAL CALL 🗣️

The BDSRA Foundation is offering $1,000 travel stipends to support members of the Batten disease community in attending Rare Disease Week in Washington, D.C. from February 24-28. This is your chance to represent the Batten community on Capitol Hill and at FDA-NIH Rare Disease Day. Together, we’ll advocate for critical changes and bring attention to Batten and rare diseases. Click the link in our bio to apply!

#BattenAdvocatesForACure #BattenDisease #RareDC2025 #RareDiseaseWeek #Advocacy #BDSRA #RareDiseaseDay #FDA #NIH

Our first newsletter of 2025 hit your inboxes this

Our first newsletter of 2025 hit your inboxes this morning! 📧 This issue is packed with research updates and information on upcoming events, an exciting new initiative for families to participate in, a new board member, and much more!

Sign up for our email list to receive future newsletters and important updates from BDSRA by clicking the link in our bio!

#BattenAdvocatesForACure #BattenDisease #BDSRA #RareDisease #January #Newsletter

NEW: BDSRA Foundation President & CEO Amy Fenton P

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: https://ow.ly/xHK350UQJBr

#BattenAdvocatesForaCure #BattenDisease #RareDisease #Updates #Events

⏰ Hurry, time’s running out! Get your FREE Val

⏰ 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! 🎉💘 Link in Bio!

#BattenAdvocatesForACure #BDSRA #ValentinesDay #Party #BattenDisease #BattenFamilies

🚨 FINAL CALL FOR THEME IDEAS 🚨 Let us know

🚨 FINAL CALL FOR THEME IDEAS 🚨

Let us know your theme ideas for this year’s BDSRA Annual Family Conference in Lincoln, Nebraska in the comments below, or click the link in our bio to email us your idea.

#BDSRAconference2025 #BattenAdvocatesForACure #BattenDisease #RareDisease #Nebraska #Ideas

TOMORROW: Join Beth Fries via Zoom for a Fam Funds

TOMORROW: Join Beth Fries via Zoom for a Fam Funds information session

This meeting will cover everything you need to know about the Fam Funds initiative and how to get set up with your own fundraiser. Register for the session here: https://ow.ly/7QMP50UMbkR

#BattenAdvocatesForACure #FamFunds #BattenDisease #Fundraising #RareDisease #Donations

🌟 Bereaved Batten parents: You are invited 🌟

🌟 Bereaved Batten parents: You are invited 🌟

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. Take this step to support yourself and your journey through grief.

If you didn’t register for a Grief Chat in 2024, please click the link in our bio and register and you will receive the Zoom link and reminder emails for all Grief Chats moving forward.

#BattenAdvocatesForACure #BattenDisease #BDSRA #Grief #Support #LifeGoesOn #BereavedParents

Happy Birthday to our Director of Family Support,

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! 💖 Wish Heather a happy birthday in the comments below!

#HappyBirthday #BattenAdvocatesForACure #BattenDisease

Here’s a preview of the Valentine’s Day Party

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. Link in bio!

#BattenAdvocatesForACure #BDSRA #ValentinesDay #Party #BattenDisease #BattenFamilies

💜 Attention Batten families and advocates! 💜

💜 Attention Batten families and advocates! 💜

The BDSRA Foundation is offering $1,000 travel stipends to help YOU attend Rare Disease Week in Washington, D.C., and FDA-NIH Rare Disease Day from February 24-28. This is your chance to meet with lawmakers and fellow advocates and amplify the voices of those affected by Batten disease and rare disease. Together, we can create change and raise awareness. Apply by February 1, link in bio!

#BattenAdvocatesForACure #BattenDisease #RareDC2025 #RareDiseaseWeek #Advocacy #BDSRA #RareDiseaseDay #FDA #NIH

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