BDSRA Foundation

Thank you, Site Solutions Worldwide, for your continued partnership and unending attention to detail! Without your help and insight, the Annual Family Conference wouldn’t be possible. #BDSRAconference2024 #PathToaCure #ConferencePlanning #SiteSolutionsWorldwide #BDSRAfoundation #bdsra #BattenAdvocatesForACure

👶 September is Newborn Screening Awareness Month #nbs2024 and there is no better time than now to show your support for one of the largest and most successful public health programs in the history of the U.S. We invite you to join us for any of the following free special events for patient advocates. 👉 Caucus Briefing (Sep. 10): https://lnkd.in/d3vCt3Ya 👉RDLA Monthly Webinar (Sep. 12): https://lnkd.in/euukiehw 👉Newborn Screening Bootcamp (Sep. 17): https://lnkd.in/ddq9kA2y Thank you to our #nbs2024 supporters! Sanofi Alexion Pharmaceuticals, Inc. Exact Sciences Kyowa Kirin, Inc.- U.S. Pfizer Sarepta Therapeutics Takeda Spark Therapeutics, Inc. Travere Therapeutics Ultragenyx Johnson & Johnson

AVAILABLE NOW: Select presentations from the 2024 Annual Family Conference in St. Louis are publicly available on our YouTube channel: https://ow.ly/GR7850Tb7sl #BDSRAconference2024 #BattenAdvocatesForACure #BattenDisease #AnnualFamilyConference

#ToolboxTuesday returns with an important reminder to read the latest edition of The Illuminator newsletter! The August edition features MAJOR clinical news for the Batten disease community, research updates, and more. Sign up for our email list: https://ow.ly/GZeK50T8Nwt #BattenAdvocatesForACure #battendisease #newsletter #clinical #battenresearch

Happy Labor Day, Batten community! We will be back in the office on Tuesday, September 3. #BattenAdvocatesForACure #LaborDay #BattenDisease

September is Newborn Screening Awareness Month. Newborn screening (NBS) is widely recognized as one of the largest and most successful disease prevention programs in U.S. history. BDSRA continues to advocate for NBS and Recommended Uniform Screening Panel (RUSP) alignment legislation to allow early intervention and help save lives. Visit the EveryLife Foundation for Rare Diseases website to learn more: https://ow.ly/l95b50SXLhS #BattenAdvocatesForACure #NewbornScreening #Awareness #RUSP #BattenDisease #RareDisease

🚨 FINAL CALL FOR BOARD APPLICATIONS 🚨 If you’re an advocate experienced in Batten disease, bi-lingual, and have experience in education, law, fundraising, or advocacy, we encourage you to apply to become a member of the BDSRA Board of Directors. TODAY is the FINAL day you can apply: https://ow.ly/mwXM50SKqCL #BattenAdvocatesForACure #BoardofDirectors #BDSRA #BattenDisease #RareDisease

HAPPY FRIDAY! 🎉 Ring in the long weekend by reading the August edition of our newsletter! This month’s edition includes MAJOR Batten disease clinical trial news, upcoming events, research updates, important deadlines, and more. Read: https://ow.ly/VhF350TakCR Sign up for our email list: https://ow.ly/1rtk50TakCU #BDSRAconference2024 #BattenAdvocatesForACure #Newsletter #BattenDisease

🚨 FINAL CALL FOR EXPRESSIONS OF INTEREST 🚨 TOMORROW IS THE FINAL DAY to submit Expressions of Interest for the inaugural Batten Disease Global Research Initiative Grant Round. We seek to support the most promising research ideas worldwide that address key research questions and areas of unmet need in Batten disease. To find out more about the Program and how to apply, please visit: https://ow.ly/kHZf50SX7Z5 #BattenAdvocatesForACure #GlobalResearchInitiative #Research #BattenDisease

A lot can change in one year, but advocating for our Batten community is something that won’t. Sometimes we cannot share updates from our industry partners, but our work behind the scenes never stops. Thank you for your patience and for trusting us to advocate for families of all CLN types. 🔗 https://ow.ly/QwbH50T9aen Tern Therapeutics #BattenAdvocatesForACure #battendisease #raredisease #genetherapy #research #clinicaltrial #tern #regenxbio #battenresearch