Exciting news - tomorrow is officially LBSL Awareness Day. We just got our letter from the government making it official and we hope you will help us spread awareness! We will unveil the official letter tomorrow. (cure dogs in pic for attention) #cureLBSL #LBSLAwarenessDay

We’re proud to partner with our friends at Cure LBSL to recognize today as the first annual #LBSLAwarenessDay. To learn about #LBSL care and research studies at Kennedy Krieger, visit our website: ow.ly/ru9I50PNQbi. #LeukodystrophyAwarenessMonth

As we wrap up Leukodystrophy awareness month - we unveil the full picture of what it's like to live with LBSL. Based on extensive patient interviews & created by professional artists - this is the first time ever the patient experience has been captured. #CureLBSL

Disease caused by "ARS" gene mutations including DARS2 (LBSL) now have their own ICD-10 code thanks to University of Utah Health. Having this code could help ensure coverage of payment for health services and products, as well as assist with LBSL research and statistical analysis.

Cool article about the folks of University of Utah Health who helped get the codes for our community. uofuhealth.utah.edu/newsroom/news/…

How many people in the world are carriers of this mutation? Our team and Broad Institute are trying to find out. We presented this work Georgetown University last week. #DataAnalytics #Cures #CureLBSL #raredisease

N of 1 medicine is a therapy based on one person's exact gene mutation. This may be an answer to LBSL someday. For people who would like to learn more about this type of drug therapy we highly recommend this upcoming webinar: us06web.zoom.us/meeting/regist…

What if the answers are right under our noses? C-Paths work will be transformative for rare disease and we are excited to be part of it! #curelbsl #curemito #AwesomeDisease

2023 was a busy year for the #AwesomeDisease community. Check out all the progress: static1.squarespace.com/static/63651b1…

Why the Zebras? Because doctors are taught, “When you hea#RDDNIH in Washington, DC repping the

#TimeIsMyelin - We are in a race against the clock. Thank you Every Cure for featuring this precious family. We need cures and we need them soon - for Madison and all the others like her. #cureLBSL Children's Hospital of Philadelphia Cure ARS youtube.com/watch?v=MwgTcY…

So proud to be an NORD member :)

Proud to announce our fourth LBSL Patient & Scientific Conference. Save the date! Registration coming soon!

Save the Date, LBSL Families! @CureLBSL is hosting their Patient & Scientific Conference in Baltimore, Maryland (and Virtually!) on July 26 - 29, 2024. Learn more: LBSLConference.org #LBSL #CURELBSL #TIMEISMYELIN

Latest paper on AAV9 gene therapy for LBSL. Funded by us - the patients and the people who love us. Thank you to all who have worked so hard for this. Kennedy Krieger #cureLBSL neurology.org/doi/abs/10.121…

We are honored and excited to have Dr. Marni J. Falk and her team from CHOP present their groundbreaking work on drug repurposing for DARS2 at our 2024 LBSL Conference this July! hashtag#CureLBSL

The LBSL conference is happening now Kennedy Krieger thank you for hosting!!! #TimeIsMyelin #curelbsl

What an honor to have scientists from NIH here Kennedy Krieger speaking to the lbsl community ! #timeismyelin #curelbsl

Join us in bringing hope and help to kids like Hazel. Donate in honor of LBSL Awareness Day - Sept. 20! #TimeIsMyelin