Cure LBSL
@CureLbsl
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LBSL is a degenerative brain/spinal cord disease. There is no cure but there is lots of hope. / a.k.a. #TheAwesomeDisease
Joined September 2013
Grateful to @KathieLGifford @klgandhoda @hodakotb for telling my story in the most beautiful way #AwesomeDisease
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Being active in the mito disease space is important to unlocking answers for our community. That is why we are proud to be involved with @MitoAction. And that is why we have been invited to present at their meeting Jan. 10 at 1:30 pm EST. Register here:
www.mitoaction.org
The annual mito town meeting is our way of kicking off the new year by sharing all that we have in store for the next 12 months! We will hear from organizations and companies around the globe that...
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It's happening people! The LBSL community is having a formal, public meeting with FDA to talk about what we would like to see from potential treatments. This is a foundational step toward approval of future drug trials and cures. SAVE THE DATE: Aug. 1, 2025
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Join us in bringing hope and help to kids like Hazel. Donate in honor of LBSL Awareness Day - Sept. 20! #TimeIsMyelin
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What an honor to have scientists from @NIH here @KennedyKrieger speaking to the lbsl community ! #timeismyelin #curelbsl
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The LBSL conference is happening now @KennedyKrieger thank you for hosting!!! #TimeIsMyelin #curelbsl
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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. @KennedyKrieger #cureLBSL .
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RT @UlfUnited: Save the Date, LBSL Families! @CureLBSL is hosting their Patient & Scientific Conference in Baltimore, Maryland (and Virtual….
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Proud to announce our fourth LBSL Patient & Scientific Conference. Save the date! Registration coming soon!
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So proud to be an @RareDiseases member :).
We had such a fun and meaningful #RareDiseaseDay with you all! From the TODAY Show Plaza in the morning to seeing the Empire State Building #LightUpForRare at night, rare was on display everywhere today!. #ShowYourStripes #NYC
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#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 .
www.youtube.com
On this Rare Disease Day, we are highlighting Madison, a patient diagnosed with a rare form of leukodystrophy (LBSL) who is fighting for her ability to walk....
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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.
We talked about this for so long and it's finally here! Thanks to @CPathInstitute @TheChampFound @CureLbsl @hopeforpdcd @AstellasUS Midwestern University Mitochondria World.
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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: .
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How many people in the world are carriers of this mutation? Our team and @broadinstitute are trying to find out. We presented this work @Georgetown last week. #DataAnalytics #Cures #CureLBSL #raredisease
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Cool article about the folks of @UofUHealth who helped get the codes for our community.
uofuhealth.utah.edu
Tina Holman never looks forward to bringing her daughter Savannah to a clinician they haven’t seen before. She knows that, yet again, she’ll need to explain her daughter’s rare condition, vanishing...
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