HISTORY OF ALS CARE PROJECT
ALS Care Project (ALSCP) was established as a nonprofit organization in 2000 to pursue the research and education mission for improving ALS care. The project evolved from over 16 years (1984-2000) of diligent effort by Pamela Cazzolli, RN to improve the care of people with ALS. Cazzolli recognized that there was an alarming high number of ALS patients who experienced avoidable complications, emergency hospitalizations, undesired outcomes, early mortality, and unnecessary high costs for care. She frequently observed unnecessary failed use of nasal/oral ventilation, significant underutilization of the simple, cost effective method of breathing support, inappropriate treatment, and unplanned or unwanted invasive life support.
In 1990, Cazzolli began as a pioneer investigator of ALS patients using noninvasive (nasal / oral) breathing support to help them to live and breathe easier. Through the years, she consulted with hundreds of ALS families and healthcare providers on achieving best patient outcomes and authored many articles on living with ALS.
ALS Care Project (ALSCP) began as a nonprofit to pursue collaborative research and education on evidence-based, best practices of ALS care to prevent the high prevalence of avoidable complications and undesired outcomes. In 2000, Cazzolli recognized that time was critical in the lives of people with ALS. She believed that the new millennium earmarked the appointed time, long past due, for a new beginning in the cause of ALS care. Until then, minimal attention was devoted to preventing the frequent adverse outcomes of people with ALS.
ALS Care Project was incorporated on February 4, 1998, as the ALS/Neuromuscular Education and Research Fund and became a nonprofit, 501© 3, tax-exempt organization in 2000. The name of the nonprofit transitioned to ALS Support Network in 2001, and then to ALS Care Project in 2007.
Social worker, Joan C. Warren, MSW helped Cazzolli launch the nonprofit in 2000. Since 1984, the two have worked together as a team in pursuing the mission. “Called to care,” ALS Care Project is dedicated to help those with ALS live the best life possible.