On March 3, 2021, Darlene Sawicki, MSN, NP-BC, became the first Mass General nurse formally recognized for the critical role nurses play in the lives of ALS patients and their families. Thanks to the generosity of the Richards family, Ms. Sawicki was named the incumbent of the new David Richards Endowed Nursing Chair, celebrating not only her compassionate care, but also her leadership in preparing other ALS nurses to follow her tireless advocacy for comprehensive patient care. This endowment not only supports the work of Ms. Sawicki now, but ensures this funding is available to ALS nurses in perpetuity. 

“You taught us what the words caring and healing really mean,” said Carol Richards, whose husband was a patient in the Mass General ALS Clinic. “Those are lessons in life we will all take forward.”

Since joining Mass General in 2005, Ms. Sawicki has served in numerous clinical, research and leadership roles, including becoming the first nurse to lead a clinical program, as Co-Director of the ALS clinic with Dr. James Berry. She has been a champion of integrating nurses fully into clinical care and built up the neurology nursing community as the inaugural Nurse Director for Ambulatory Neurology. She currently serves as Director of Advanced Practice Providers (APP) for Mass General, where she is responsible for advancing APP clinical practice, policy and community. Ms. Sawicki continues to care for patients as part of the multidisciplinary team in the ALS clinic as well as an urgent clinic for ALS that focuses on acute clinical issues and goals of care. She has won several awards and is currently a member of Organization of Nurse Leaders, American College of Nurse Practitioners. She founded and previously chaired the Research Nurse Committee for the Northeast ALS Consortium.

At the virtual chair celebration, nearly 80 people including individuals with ALS, family members and colleagues shared an outpouring of love and respect for Ms. Sawicki. Led by Peter Slavin, MD, president of Mass General, speakers included Merit Cudkowicz, MD, MSc, Chief of Neurology, Tim Ferris, MD, President of the Mass General Physicians’ Organization, Debbie Burke, senior vice president for Patient Care and chief nurse at Mass General and James Berry, MD, co-director of the ALS Multidisciplinary Care clinic.

Dr. Cudkowicz, whose practice is dedicated to patients with ALS and who has been a longtime advocate and mentor of Ms. Sawicki, said that while the clinic is working hard to find the cures for ALS, “we are also committed to easing the burden of the illness on patients and their families,” she said. “Darlene’s nursing model focuses on providing our patients with the best possible experience, reminding us that treating people with humanity may be even more important than our medical expertise.”

Ms. Sawicki’s determination to meet patients where they are paved the way for a House Calls program, led by nurses, and she developed a primary nurse model, providing patients and families with one nurse who could get to know them and be available 24/7 to provide advice, or simply offer a sympathetic ear. 

“I’m amazed you worked for anyone else,” said one family member. “Your capacity for love and care, along with your availability whenever we needed you, are truly extraordinary.”

That sentiment was echoed by many patients and family members who spoke of Ms. Sawicki’s honesty and empathy and most importantly, her availability. For her part, Ms. Sawicki said the honor of the chair belonged to everyone.

“It is such a privilege for me to have patients give me permission to walk alongside them at such an intimate moment, to really trust me,” she said. “I have been given so much, by all my patients, their families, and all the amazing nurses and colleagues who work with me.”