Sharing Sources: ALS Association
by INELDA
ALS Association
ALS (amyotrophic lateral sclerosis), sometimes referred to as Lou Gehrig’s disease after the Yankee baseball great, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The ALS Association is a nonprofit that supports research and advocacy for those living with the disease and has earned a gold seal from Guide Star and a four-star ranking from Charity Navigator. Founded in 1985, it supplies resources and funding “to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.”
ALS most often develops between the ages of 40 and 70, with an average age of 55 years old. While ALS is 20% more common in men, as one’s age increases, diagnoses equalize between the sexes. Most cases (90%) have no known genetic connections, while 10% of cases are genetic. Although it is currently unclear why, military veterans are more likely to be diagnosed with the disease than the general public. It is estimated that over 200,000 people are living with ALS worldwide.
As ALS does not currently have a cure, once it is diagnosed it almost always progresses, and the average person with ALS lives for three years with the disease. However, some individuals can live with this disease for over 20 years. Understanding the progression of the disease is important for end-of-life doulas to best support individuals and their loved ones living with ALS.
According to the National Institutes of Health, the first sign of ALS usually “appears in the hand or arm and can show as difficulty with simple tasks such as buttoning a shirt, writing, or turning a key in a lock.” While not all experiences are the same, progressive muscle weakness and paralysis are experienced by all. As the disease progresses, symptoms can include tripping, dropping items, muscle cramps, and uncontrollable periods of laughing or crying. As the breathing muscles of the individual become compromised, people with the disease require permanent ventilatory support. Individuals toward the end of their lives may lose the ability to speak, eat, move, and breathe.
The ALS Association has chapters throughout the country that assist individuals at all stages of the disease, from recent diagnosis through advance care directives and end-of-life plans. In the past year, 21,545 people living with ALS were supported through the chapter network. Services provided by regional chapters are available to all individuals and families affected by ALS. Type of help include home modifications and equipment load programs, including lifts, wheelchairs, beds, and assistive technologies such as tablets and track balls, as well as transportation, support groups, and respite programs for caregivers. The ALS Association provides support materials for all ages, from children who are impacted by ALS to information on voice banking when patients still have the ability to verbally communicate.
With the success of programs such as the ALS Ice Bucket Challenge, the organization has been able to commit $131 million to ALS research partners in both the United States and globally. As of February last year, the organization has funded 162 active research projects.