Calling all LBSL patient and families! The LBSL externally-led PFDD meeting will be held on Friday, Aug. 1, in Washington, D.C. Representatives from the U.S. Food and Drug Administration (FDA) will join us in person and virtually to hear directly from people living with LBSL. This hybrid event is open to anyone with LBSL and their families. At the end of the event, we will have a meeting recording and Voice of the Patient report to help inform future drug development efforts.
A limited number of travel grants are available for LBSL patients. Contact info@curelbsl.org for details!
Join Us in D.C. on Aug. 1!
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!
Cure LBSL’s 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 disease, uniting LBSL families, doctors and researchers around the world.
Find a Cure
Finding the cure is a marathon, not a sprint. By giving hope to LBSL families and working together to raise donations, we will cross the finish line.
Make an Impact
We provide resources and information to LBSL patients and families.