Designating May 2024 as "ALS Awareness Month".

Health
senate

Introduced on May 23, 2024 by Christopher A. Coons

Cosponsors

Legislation Details

  • Designates May 2024 as “ALS Awareness Month.”
  • Acknowledges amyotrophic lateral sclerosis (ALS) as a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord.
  • Notes the life expectancy for an individual with ALS is between 2 and 5 years after diagnosis.
  • States ALS occurs worldwide without racial, ethnic, gender, or socioeconomic boundaries and can affect anyone.
  • Mentions that the cause of ALS is unknown in up to 90% of cases, with approximately 10% of cases having a strong known genetic driver.
  • Highlights the delay in diagnosis, with an average period of more than 1 year from symptom onset to diagnosis.
  • Describes the progression of ALS, including muscle weakness, wasting, and paralysis, affecting limbs, trunk, and muscles controlling vital functions like speech, swallowing, and breathing.
  • Estimates tens of thousands of individuals in the United States have ALS at any given time, with more than 5,000 new diagnoses each year and 15 new diagnoses each day.
  • Notes every 90 minutes someone in the United States dies from ALS, primarily due to respiratory failure.
  • Points out that military veterans are at a higher risk of being diagnosed with ALS.
  • Acknowledges there is no cure for ALS as of the resolution’s introduction.
  • Recognizes the significant support provided by spouses, children, and family members to individuals living with ALS, including day-to-day care.
  • Highlights the significant costs associated with medical care, equipment, and home care services for individuals with ALS as the disease progresses.
  • Affirms the Senate’s dedication to ensuring individuals with ALS have access to effective treatments, identifying risk factors and causes of ALS, empowering individuals with ALS, acknowledging the burdens of living with ALS, and ensuring high-quality services and supports for individuals with ALS and their caregivers.
  • Commends the dedication of family members, friends, organizations, volunteers, researchers, and caregivers working to improve the quality and length of life for ALS patients and to develop treatments and cures.

Last updated 9/12/2024