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LBSL Awareness Day

September 20

Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation (LBSL) is an ultra-rare neurogenetic disease which is both a mitochondrial disorder and a leukodystrophy.

September is widely recognized as Leukodystrophy Awareness Month. The third week of September is also recognized as World Mitochondrial Disorders Awareness Week. As LBSL falls at the intersection of these two categories of disease, it is fitting to honor LBSL Awareness Day on September 20.

Cure LBSL is an Arlington, Virginia non-profit organization, and the only patient advocacy foundation in the world solely focused on curing this devastating illness.
The mission of Cure LBSL is to:
• Bring hope to children and families suffering with LBSL
• Fuel cutting-edge research that will unlock the mysteries behind this disease and identify the keys to a cure
• Help patients around the world participate in clinical studies
• Help desperate parents learn about the disease and therapeutic options
• Allow families to connect and support one another
• Enable cooperation between researchers
• Amplify the patient voice in the medical and scientific communities
• Facilitate patient engagement and advocacy efforts with the FDA
The foundation was originally called A Cure For Ellie, in honor of Virginia native Ellie McGinn. Ellie has been honored by The National Organization for Rare Disorders (NORD) with a Rare Impact Award, and recently received an advocacy award from the Arlington Special Education PTA.


September 20
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NORD Breakthrough Summit | Rare Disease Conference