History of ALS Care in Ohio

After comprehensive experience with ALS care in the 1970’s and private duty nursing of ALS patients at their homes for two years, Pam Cazzolli, RN, began her mission for ALS on March 4, 1984: To learn everything she could about ALS and to do something to help improve the care. She immediately met Joan Warren, MSW, of the Visiting Nurse Society, who originally sponsored the group, and the two co-facilitated together the ALS support group in Canton, Ohio for the next 24 years. (When Mercy Medical Center (current name of the hospital) purchased the VNS, Mercy sponsored the support meetings from 1997 until 2000. Since then, ALSCP has sponsored the group).

In 1984, Cazzolli began journey of visiting ALS patients at home throughout Ohio.

Beginning in 1984, Cazzolli traveled extensively throughout Ohio, and later to western Pennsylvania and West Virginia in search of ALS patients, particularly those using breathing support. Over the years, she visited hundreds of ALS patients at their homes and care facilities and consulted with thousands via the phone and online. Cazzolli learned firsthand that there are no two ALS patients exactly alike, and that the care for ALS is the most challenging of all disabling disorders.

In 1988, Pamela Cazzolli and Sally Nousek co-organized the ALSA Eastern Ohio Chapter (now call the Northern Ohio Chapter).

When Cazzolli began her ALS care journey, she attended ALS support group monthly meetings at Ohio State University for several years. Moreover, the research department of Northeast Ohio Universities College of Medicine helped Cazzolli plan the methods and approved her research studies. In that era, she also began an ALS support group in Akron, and one in Youngstown. In 1985-86, the National ALS Foundation, established in 1971 (New York City), and the ALS Society of America, established in 1975 (Sherman Oaks, CA), merged to become the ALS Association (ALSA). In 1987, Cazzolli attended ALSA’s first leadership conference in LA. As one of the first ALS nurse consultants in the country, she organized the ALSA Eastern Ohio Chapter with Sally Nousek of Cleveland on August 2, 1988. (ALSAEOC is now called the Northern Ohio Chapter).

For nearly 12 years, Cazzolli served as the Nurse Consultant for the ALSA Chapter and worked closely with Sally Nousek. She also helped initiate the ALS Center of the Cleveland Clinic, where she served as the first Nurse Coordinator of the center (March 1989 to March 1995) on Thursdays. In addition to performing these duties, Cazzolli pursued and self-funded a large, observational, prospective investigation of ALS patients using a ventilator at home in a tri-state region. Recognizing the high prevalence of ALS patients who faced avoidable distress, failed care interventions, undesired outcomes and early mortality, Cazzolli launched the project in 2000, with the help of Joan Warren, MSW, in order to pursue the research and education mission.		Pamela Cazzolli gives keynote presentation at the Chapter Charter Meeting in Fairlawn, OH on August 2, 1988, when she and Sally Nousek started the ALSA Eastern Ohio Chapter.
During the new millennium, Cazzolli also worked closely with the Muscular Dystrophy Association. She helped facilitate support group meetings and provided educational programs on ALS with the MDA.

Through the years, Cazzolli visited numerous ALS patients at home using a ventilator. To her left is international guest, Yuki Nakayama, RN, PhD.		Visiting patient using tracheotomy ventilation.
Beth Phillips, PT has demonstrated transfer techniques at the ALS support group meeting in Canton, Ohio for more than 20 years.		Cazzolli represented Ohio with the American College of Chest Physicians who lobbied in Washington DC for respiratory care benefits.