BDSRA Foundation

Today, October 29, is Child Neurology Awareness Day, an initiative dedicated to increasing understanding and awareness of neurological disorders in children, which includes Batten disease, the most common form of neurodegeneration in children. Share this post to help raise awareness for Batten disease and child neurology. Together, we are Batten Advocates for a Cure. #ChildNeurologyAwarenessDay #BattenAdvocatesForACure #BattenDisease #RareDisease #Awareness

WATCH: Our Database Manager Noah Siedman joined the Rare Siblings panel at last month's Global Genes RARE Advocacy Summit in Kansas City: https://ow.ly/zYTu50TRWfi #BattenAdvocatesForACure #WeekInRARE #RAREAdvocacySummit #battendisease #raredisease #panel #globalgenes

Cheers to our favorite mate, Ineka, for another trip around the sun! We are so grateful for the joy she brings to the job daily and her love for our Batten community. To catch her when she wakes up on her birthday, the 27th, please join us in wishing her a happy birthday on the 26th in the U.S.! #BattenAdvocatesForACure

By donating $5 on Fridays, you help ensure that BDSRA stays connected to Batten families of all CLN types no matter where they are in their Batten journeys. That’s the power of FIVE. Give $5 today: https://ow.ly/Co1c50RKotL #5dollarfridays #Fundraising #BattenDisease #BattenAdvocatesForACure #BDSRA #PowerOfFive #RareDisease

🚨🚨 BATTEN RESEARCH UPDATE 🚨🚨 The Batten Disease Global Research Initiative is proud to showcase the results of its call for Expressions of Interest. Successful applicants have been invited to submit full proposals due November 19. Grant awards will be announced in February 2025: https://lnkd.in/efYjYbiY Batten Disease Support & Research Association (BDSRA) Australia Batten Disease Family Association #BattenAdvocatesForACure #BattenDisease #BattenResearch #GRI #Research #Clinical #RareDisease

Election Day is two weeks away! We encourage you to visit this link to see what statewide measures may be on the ballot in your state that could affect the Rare Disease community. Make your voice heard on November 5: https://ow.ly/tCmR50TQ5Jw #BattenAdvocatesForACure #ElectionDay #Vote #BattenDisease #RareDisease

This past weekend, our Head of Research & Medical Affairs Dr. Ineka Whiteman presented at the Lysosomal Disease Patient Conference in Melbourne, Australia, sharing her experience revitalizing the Batten Disease Clinical Centers of Excellence program here in the U.S. Thank you, Ineka, for sharing with colleagues around the world and for your continued advocacy and compassion for Batten families of all CLN types both here in the U.S. and abroad! Learn more about the CoE program: https://ow.ly/FjPE50TQaAm Batten Disease Support & Research Association (BDSRA) Australia #BattenAdvocatesForACure #BattenDisease #RareDisease #LysosomalDiseasePatientConference #Advocacy #Research #Australia #CentersofExcellence

HAPPENING TONIGHT: If you’re a bereaved Batten parent, we encourage you to join tonight’s Grief Chat at 7 PM EDT via Zoom. If you’ve already completed the form, the Zoom link was emailed to you this morning. Learn more and register here: https://ow.ly/Yntw50Tqcfp #BereavedParents #GriefSupport #CommunitySupport #SupportGroup #Grief #BattenDisease

Batten disease impacts families all over the world. We communicate and collaborate with our international partners now regularly. Thanks to your donations, we can continue to help support the Batten community globally. That’s the power of FIVE. 🔗 https://ow.ly/k5f750TqluU #5dollarfridays #Fundraising #BattenDisease #BattenAdvocatesForACure #GlobalSupport #InternationalCollaboration #PatientAdvocacy

MEMORIAL UPDATE: Our Database Manager Noah Siedman brings you the latest information regarding the BDSRA Foundation Memorial. Please follow our social media channels and sign up for our email list for further updates by clicking the link in our bio. #BattenAdvocatesForACure #BattenDisease #Memorial #RareDisease #Legacy