Ellen had a complex medical history throughout her adult life. She was burdened by type 1 and type 2 Diabetes, Multiple Myeloma (MM), and, later on, Multiple System Atrophy (MSA). Each of these is incurable and requires creative solutions to stay in control and in remission. For Ellen, clinical trials became part of the therapeutic regimen. She volunteered for four clinical trials.

Her final clinical trial, in 2019, used a therapy known as CAR‑T to treat her multiple myeloma. From an oncology standpoint, the trial was remarkably successful, giving her three years of remission. Yet only a few months after the T‑cell infusion, Ellen began experiencing problems with her balance. We often wondered whether these persistent issues were connected to the treatment, though we never found a clear answer. In time, those symptoms led to a diagnosis of MSA, a rare but aggressive form of Parkinsonism.

The standard-of-care diagnosis for MSA involves a clinical assessment of one’s coordination and mobility. The typical therapy, which was FDA approved in 1975, is the same approach applied to those with Parkinson’s disease: dopamine replenishment with Carbidopa/Levodopa. Unfortunately, this therapy is far less effective for those with MSA.

Ellen died from MM. However, MSA robbed her of her quality of life. Given the limited medical understanding of MSA, her family has partnered with the University of Washington by creating the Ellen Moss Robinson Research Fund to investigate this poorly understood disease.