HISTORY OF ALS CARE PROJECT
ALS Care Project(ALSCP) was established in July, 2000, to continue clinical care research on the use of noninvasive and invasive breathing support for ALS patients in the home setting and to pursue education (on evidence-based care and experience) for achieving best practices of ALS care in the community.
The project evolved from recognizing that best practices of respiratory management for ALS in the community were either absent or minimal in the literature, resulting in the high prevalence of avoidable complications, emergency hospitalizations, and unwanted outcomes.
Additionally, patient outcomes may go unnoticed by ALS/neuromuscular/ university centers, if they do not see patients at their homes, or if patients do not return for appointments, particularly at the time if signs of respiratory insufficiency would suddenly arise.
Cazzolli launched the project and pursued the mission with the help of social worker, Joan C. Warren, MSW through the years. In July 1983, long before ALSCP was established, Warren was the pioneer facilitator of the Canton ALS Support Group, a program begun by the former Visiting Nurse Society of Central Stark County, sponsored by the United Way and Stark County Neuromuscular Association. After Cazzolli met Warren in March 1984 at the support group meeting, the two facilitated the group in Canton, bi-monthly on Sundays for 24 consecutive years. The group was very well attended and became nationally known as one of the largest ALS support groups in the country.
Vision of ALS Care Project:
“For the prospective studies through the years to show reliable clinical evidence for establishing best practices of respiratory management of patients with ALS in the community.”