September 20 is LBSL Awareness Day!
All month long in September, our community is raising funds and awareness for the Cure LBSL movement! We are at a critical point: closer to clinical trials for gene therapies, and also in our final year of the Chan Zuckerberg Institute grant funding. What does that mean? We need your support more than ever to continue our advocacy work. Please partner with us by hosting a virtual fundraiser.
Click below to get started. As well, access this Turn-Key Toolkit for sample wording. Everyone who participates gets some free Cure LBSL swag!
What is LBSL?
LBSL (Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation) 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.
Our Accomplishments
Raised Over $3.5 million for Research
2017 Rare Impact Award Winner
Host First-Ever International LBSL Patient Conference
Created Network of Families and Scientists Across Six Continents
Donations Goal
$232,000 of $500,000
Help us reach our goal!
Our Mission
Find a cure for LBSL, advance awareness of the disease, and support patients, families, and medical providers confronted with this ultra-rare condition.
Bring Awareness
We bring international attention to this ultra-rare condition, uniting families, doctors and researchers around the world.
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 provide resources and information to patients and newly diagnosed families.