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 with a prevalence of less than 1 in 1,000,000 people and only about 100 to 200 known cases worldwide as of 2023 to 2025; and

WHEREAS, LBSL is both a mitochondrial disorder and a form of leukodystrophy, affecting the white matter of the central nervous system, with characteristic involvement of brainstem and spinal cord tracts; 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 decreased position (proprioception) and vibration sense in the limbs, especially the legs, making walking difficult; and

WHEREAS, early-infantile presentations of LBSL can be devastating, including seizures, global developmental delay, and severe hypotonia, often resulting in total dependence for care and sometimes early death; and

WHEREAS, affected individuals can develop recurrent seizures (epilepsy), speech difficulties (dysarthria), learning problems, and mild cognitive decline, and some are vulnerable to episodes of reversible neurologic deterioration triggered by minor head trauma or febrile illness; and

WHEREAS, the “small but mighty” global LBSL community of patients, families, and caregivers has come together in search of a cure for this devastating disorder, as there is currently no cure or available treatments, and due to its extreme rarity, it often goes undiagnosed or misdiagnosed; 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, 2025, as LBSL AWARENESS DAY in the COMMONWEALTH OF VIRGINIA, and I call this observance to the attention of all our citizens.