Ellie Hazel Sierra Edward Dean
Ellie Hazel Sierra Edward Dean
A Cure for
Help us cure LBSL.
Every donation counts.
What is LBSL?
LBSL is a very rare and degenerative genetic brain and spinal cord disorder. It slowly robs people of their ability to walk, then stand, then coordinate all motor movements.
Bring Awareness
We do our best to provide resources and information to patients and newly diagnosed families.
Find a Cure
Finding the cure is a marathon, not a sprint. By giving hope to affected families and working together to raise donations, we will cross the finish line.
Make an Impact
We do our best to provide resources and information to patients and newly diagnosed families.
Our Accomplishments
Raised over $2 million for research 2017 Rare Impact Award Winner Host of the first-ever international LBSL patient conference Created Network of families and scientists across six continents.
Donations Goal
$232,000 of $500,000
Help us meet our donation goals!
OTHER AWESOME PEOPLE
Meet Alice
Meet Ellie
Meet Edward
Meet Dean
Meet Patrick
FOLLOW US
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#RareDiseaseDay2023 we are showing what's possible. Thanks to all who believe rare is not forgotten! #curelbsl… https://t.co/8oAnThiCnk -
RT @EngageHealthInc: Are you someone that could fill a critical job opportunity as a LBSL research lab tech? Cure LBLS has a GREAT job o… https://t.co/walb1FqO4g
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RT @UlfUnited: A note from @CureLbsl: With only 100 to 500 LBSL patients in the world - we are ultra-rare and ultra-awesome. Fight… https://t.co/DZWd6Nt8xl
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Proud to have our logo on the @UlfUnited #rarediseaseawareness T shirt. LBSL is one 50+ Leukodystrophies Leuko =… https://t.co/h7EPcAwHIz
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We had a busy 2022! Check it out here: https://t.co/dFFdUGGGVC... Thanks to all who made these achievements possib… https://t.co/FX3RmiRAfS