BDSRA Foundation

?? RESEARCHER SPOTLIGHT ?? BDGRI grant recipient Kasparas Petkevicius will focus his research on CLN8 disease to find a new treatment approach by directly providing bis(monoacylglycero)phosphate (BMP) or related molecules to affected cells. Learn more about his research by visiting the BDGRI website: https://ow.ly/Uik750VmPAr #BattenResearch #BattenDisease #RareDisease #Science #Research #Clinical #Grant

?? RESEARCHER SPOTLIGHT ?? More than half of teenagers and adults with CLN3 experience recurring episodes of fearful behavior. Get to know BDGRI grant recipient and Denmark native John ?stergaard and his research in this area: https://ow.ly/U4rQ50VmnZy #BattenResearch #BattenDisease #RareDisease #Science #Research #Clinical #Grant”

?? RESEARCHER SPOTLIGHT ?? Sara Mole, a BDGRI inaugural research grant round recipient, wants to develop lifesaving or quality-of-life enhancing drugs for Batten disease. Learn more by watching this video and visiting the BDGRI website: https://ow.ly/lpWg50VlqBu UCL #BattenResearch #BattenDisease #RareDisease #Science #Research #Clinical #Grant

BREAKING: We are proud to announce the recipients of the Batten Disease Global Research Initiative inaugural Research Grant round. Learn more about the recipients and their research: https://ow.ly/zSVH50VjYlG #BattenResearch #BattenDisease #RareDisease #Science #Research #Clinical #Grant

What’s in store for this year’s International Batten Disease Awareness Day T-shirt design? You decide! Submit a design by March 30 and read the design rules and guidelines. Finalists will be selected in early April with public voting to follow. Learn more: https://ow.ly/Ltvs50Vgv5o #BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Contest

BIG RESEARCH NEWS! Following a robust selection process, the Batten Disease Global Research Initiative has awarded research grants to six recipients totaling USD $320,000! Tune in next week as we unveil our grant recipients: https://battenresearch.org #BattenResearch #BrainAwarenessWeek #BattenDisease #RareDisease #Science #Research #Clinical #Grant

? Join our Virtual Coffee Chats this month! ? Hosted by Batten parent Heather Dainiak, these chats are a safe space for parents and caregivers of all CLN types in the United States, Canada, and abroad. This month’s theme is, “The Power of Memories.” Join us on Tuesday, March 25 at 7 PM EDT or Friday, March 28 at 11 AM EDT. If you registered for last month’s chats, you do not need to register again and will receive email reminders: https://ow.ly/8afg50Vguz9 #BattenAdvocatesForACure #BattenDisease #Coffee #Chat #Support #Virtual

IT’S BACK!! ?? For the third straight year, we are holding another T-shirt contest to determine the design of this year’s International Batten Disease Awareness Day T-shirt! DEADLINE IS 11:59 PM EDT ON SUNDAY, MARCH 30. View the complete rules and guidelines: https://ow.ly/fR3l50Ve7mW #BattenDay2025 #BattenAdvocatesForACure #BattenDisease #Awareness #Advocacy #Contest

It’s Brain Awareness Week – a global campaign to foster public enthusiasm and support for brain science. Let’s take some time to learn more about the Batten Disease Global Research Initiative. Big news is coming soon! ?? Visit the GRI website: https://ow.ly/ew3n50VeS6J #BattenResearch #BrainAwarenessWeek #BattenDisease #RareDisease #Science #Research #Clinical

?? RARE DISEASE WEEK RECAP ?? Batten grandfather Mitch Larson traveled to D.C. from Nebraska last week to participate in Rare Disease Week on Capitol Hill. Listen as he details his experience advocating for the Batten disease community. Visit our website for more content from Rare Disease Week, and THANK YOU ALL for your relentless advocacy: https://ow.ly/wn0O50VcCq8 #BattenAdvocatesForACure #RareDC2025 #BattenDisease #RareDisease #Advocate