OUR PRIMARY MISSION

Clinical research and education on best practices and choices of respiratory care for ALS

OUR VISION

To improve survival and outcomes of people with ALS

PAMELA A. CAZZOLLI, RN

  • ALS Care Project, Director

  • ALS Nurse Consultant

  • Clinical Research Nurse Coordinator

• American Association of Respiratory Care (member 25+ years)

• American College of Chest Physicians (member 25+ years)

• Legacy Advisory Board Member, Stark State College, Canton, OH, Respiratory Care Dept.

• Northeast Amyotrophic Lateral Sclerosis (NEALS) Consortium member (neals.org):

• NEALS Ventilation and Respiratory Care Committee

• NEALS Advanced Practice Providers Committee

Publications / Abstracts (Since 2020)

Cazzolli PA, Brooks BR, Nakayama Y, Lewarski JS, McKim DA, Holt SL, Chatburn RL. The Oral Secretion Scale and prognostic factors for survival in subjects with amyotrophic lateral sclerosis. Respir Care 2020; 65(8):1063-1076.

Cazzolli PA, Brooks BR, Nakayama Y, Lewarski JS, McKim DA. Survival and outcomes of 122 subjects with amyotrophic lateral sclerosis using long-term mechanical ventilation; Proceedings of the 22nd Annual Meeting of the Northeast ALS Consortium. Muscle & Nerve. 2023;68(Suppl.1):S1–S82.

Cazzolli PA, Brooks BR, Nakayama Y, Lewarski JS, McKim DA. Factors associated with emergency tracheostomy or early mortality in a population-based study of 170 subjects with ALS/MND. [Abstract] Amyotroph Lateral Scler Frontotemporal Degener 2023; Volume 24; Suppl 1:7.

Epidemiology Research History

• Epidemiology Nurse Coordinator in Ohio (2017-2022) of the CDC Ohio ALS Study (for exploring the environmental risk factors that may cause ALS and for identifying the incidence of ALS in Ohio);

• Served in the CDC research study in collaboration with the principal investigators: Erik P. Pioro, MD, Section of ALS and Related Disorders, Cleveland Clinic, Cleveland, OH; Elijah W. Stommel, MD, Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH; Walter G. Bradley, MD, Department of Neurology, Miller School of Medicine, University of Miami, FL.

• Andrew AS, Bradley WG, et al. Risk factors for amyotrophic lateral sclerosis: a regional United States case-control study. Muscle & Nerve 2021;63:52-59.

• Andrew AS, Pioro EP, et al. The incidence of amyotrophic lateral sclerosis in Ohio 2016-2018: The Ohio population-based ALS Registry. Neuroepidemiology 2021; D01: 10.1159/000515103.

“Exploring risk factors today gives hope for prevention & treatment of ALS tomorrow.”

ALS Nurse History

• First Nurse Coordinator of the Cleveland Clinic ALSA Center, Cleveland, OH (1989-1995)

• Co-founded the ALS Association Eastern Ohio Chapter with the late Sally Nousek of Cleveland on August 2, 1988 in Fairlawn, OH (now the Northern Ohio Chapter, Independence, OH)

• Served as the ALSA Chapter Nurse (1988-2000); Chapter was awarded the Best Patient Services Award from the National ALS Association in the 1990s

• Co-Facilitator of ALS support groups in Ohio: 35 years

• ALS Nurse Consultant in Ohio since March 4, 1984

Beth Ann Phillips, PT

President

• Physical Therapy Consultant

• Specialty: ALS

Ms. Phillips served adult patients with neurologic disorders at Mercy Hospital in Canton, Ohio (now Cleveland Clinic Mercy Medical Center) for more than 40 years.  For 24 consecutive years, Ms. Phillips also demonstrated transfer techniques, methods for enhancing mobility, and ways to make life easier at the ALS support group meetings in Canton, Ohio.

Eyad Nashawati, MD

Medical Advisor

• Specializes in the respiratory management of ALS.

• For more than two decades, Dr. Nashawati has served as a leading expert in Ohio for noninvasive management of ALS in the community-based setting.

• Known by his patients for his kindness, compassion and fulfilling patient wishes.

• Special interest includes bioethics.

Pulmonary Physicians, Inc. Canton, OH

A 20 Year Study of ALS Patients Using Noninvasive Ventilation in the Community-Based Setting

ALS Care Project was established in 2000 to pursue clinical care (collaborative) research of ventilator users with ALS in the community-based setting.

2000: Identified the need for best practices of respiratory / secretion management for people with ALS using noninvasive and invasive breathing support; and the need for well-planned, observational, prospective, longitudinal studies in the community-based setting through patient visits.

Inspired by Florence Nightingale

Pamela Cazzolli’s nursing role model has always been Florence Nightingale, the founder of the profession of modern nursing. Inspired by Nightingale’s dedication, Pamela has always endeavored to emulate the virtues that Nightingale established, and to apply those same virtues while searching for the best practices of nursing care for ALS. Those core values that Nightingale represented so well are still relevant today. They are the bedrock upon which the nurses of tomorrow will still be standing.

Trip to Turkey where Florence Nightingale began the field of nursing

In 2000, Cazzolli was invited to Turkey and provided a one-week course on caring for ALS patients at home for the Florence Nightingale School of Nursing in Istanbul and for nurses throughout Turkey. Sponsored by the Neuromuscular Association of Turkey, Cazzolli also provided programs at the University of Istanbul, multiple other centers, in which one program was televised. She also met with the government in Ankara (capital of Turkey) to discuss solutions for making Turkey more accessible for people with disabilities.

The photos below from left to right:

(1) Cazzolli interacting with the Florence Nightingale nurses

(2) Met with staff at Neuromuscular Association of Turkey

(3) Private meeting with the President of the University of Istanbul

(4) Met with government officials in Ankara, Turkey

(Click photos to view larger)

Private tour of military base where Florence Nightingale began the field of nursing in Istanbul during the Crimean War

Prior to her departure from Turkey, Cazzolli was given a private, unforgettable tour to the military base in Istanbul which was the very location where Florence Nightingale from Britain administered care to the wounded soldiers during the Crimean War (1854-1856), resulting in the birth of modern nursing. During Nightingale’s efforts to formalize nursing education, she established the Nightingale School of Nursing at St. Thomas Hospital in London in 1860.

The photos below from left to right:

(1) exact site of the military base in Istanbul where Florence Nightingale cared for wounded soldiers and birthed the field of nursing

(2) first floor of the military base where Nightingale climbed up the spiral staircase to administer care

(3) view of one long corridor where wounded soldiers lied on their cots on each side of the corridor, next to a heater and nearby window

(4) private quarters where Nightingale rested and had her tea and coffee

(5) Cazzolli holding Florence’s personal coffee pot

(6) Florence Nightingale’s desk

(7) Cazzolli visiting the Florence Nightingale Museum in London (at later date)

(Click photos to view larger)