Relates to establishing a state amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) registry

• Democratic6

◆ The sponsor's argument

Why Jessica Scarcella-Spanton says this is needed

Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over time, it leads to gradual loss of muscle control, resulting in paralysis and respiratory failure, as it impacts the neurons responsible for voluntary movement. There is no cure for ALS, and the disease is always fatal. The average life expectancy after diagnosis is between two to five years, though some individuals live longer. ALS affects speech, swallowing, movement, and breathing, but cognitive function is often preserved. At any given time, approximately 30,000 people in the United States are living with ALS, with around 5,000 to 6,000 new cases diagnosed each year. The estimated lifetime risk of developing the disease is about one in three hundred. While ALS is more common in people over the age of fifty-five, it can occur at any age. Most cases, about 90 percent, occur sporadically with no known family history, while the remaining 10 percent are inherited through genetic mutations. Currently, ALS case reporting in the United States is voluntary, relying on self-enrollment in the National ALS Registry managed by the CDC. While this Registry is a valuable tool for tracking ALS cases, its self- reporting nature creates a major data gap-many people with ALS are never registered, leaving researchers and policymakers with an incomplete picture of the disease. An ALS registry will enable New York State to conduct true population-based studies in ALS. The size of New York would make it on par with the Netherlands registry, and far larger than the ones in Ireland, Italy, and the UK. Pairing this with environmental and lifestyle questionnaires would enable the identification of possible disease-modifying interventions that are truly scalable. The scientific value of such population studies is enormous and would easily dwarf the environmental and epidemiological studies being done elsewhere.

This is the sponsor's own case for the bill, quoted from their memorandum. It is not Agora's description of what the bill does.