LBSL Awareness Day

By virtue of the authority vested by the Constitution of Virginia in the Governor of the Commonwealth of Virginia, there is hereby officially recognized:

LBSL Awareness Day

WHEREAS, Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation (LBSL) is an ultra-rare, genetic, neurodegenerative disorder that primarily starts in infancy or childhood; and

WHEREAS, LBSL is both a mitochondrial disorder and a form of leukodystrophy, affecting the white matter of the brain and nervous system; and

WHEREAS, most affected individuals begin to develop movement problems during childhood or adolescence; however, in some individuals, these problems do not develop until adulthood; and

WHEREAS, individuals with LBSL have abnormal muscle stiffness (spasticity), difficulty with coordinating movements (ataxia), and the inability to sense the position of their limbs or vibrations with their limbs, especially the legs, making walking difficult; and

WHEREAS, infantile onset of LBSL can have devastating manifestations including seizures, blindness, global developmental delay, and severe hypotonia, resulting in total dependence for care needs and often early demise; and

WHEREAS, affected individuals can develop recurrent seizures (epilepsy), speech difficulties (dysarthria), learning problems, mild deterioration of mental functioning, and are vulnerable to severe complications following minor head trauma, which may trigger a loss of consciousness, other reversible neurological problems, or fever; and

WHEREAS, the “small but mighty” global LBSL community of patients, families, and caregivers have come together in search of a cure for this devastating disorder as there is currently no cure and no available treatments; and

WHEREAS, increased awareness and education around LBSL will improve diagnosis, family support, research, and future treatment goals;

NOW THEREFORE, I, Glenn Youngkin, do hereby recognize September 20, 2024, as LBSL AWARENESS DAY in the Commonwealth of Virginia, and I call this observance to the attention of all our citizens.

Governor of Virginia

Proclamations