The CASA-MS study’s Co-Investigator Dejan Jakimovski, Ph.D., recently spoke with some of the participants in the first-of-its-kind, investigator-initiated clinical trial that seeks answers for the 2.8 million MS patients who share the fear that their disease may accelerate at any time, leaving them completely dependent on care they may not be able to find or afford. “Will I just need a cane or a walker? Or will I become locked in my body until the end of my life?”

Watch the full presentation here.  

The study is underway and, as part of its patient centered research model, researchers share progress, insights, and challenges with the participants who make it possible.

For the first time, BNAC researchers are comparing people with severe MS to others whose disease has not progressed. The goal: to develop the diagnostic and analytical tools necessary to begin to understand if, how, and why some will face severe disability from MS.

People from The Boston Home, a residential facility specializing in the care of people with advanced and debilitating MS, are working with BNAC and a control group of participants from the Buffalo region to complete a study that will interest millions of patients, clinicians, caregivers, and researchers around the world. Many of these participants experienced sudden, seemingly random, and severe progression of their disease, to where they are unable, without mechanical or caregiver assistance, to dress, eat, or stand. They live in a special facility that provides round-the-clock care. They are among the 5-10 percent of people with severe or advanced (“primary progressive”) MS whose disease progressed suddenly, for reasons clinicians can’t predict and science doesn’t yet understand.

Called CASA-MS, for Comprehensive Assessment of Severely Affected MS, the trial compares 60 people with severe MS with a control group of 60, age- and gender-matched people with MS whose disease is not severe.

Your gift to support this $1 million privately-funded study will be matched by The Annette Funicello Research Fund for Neurological Diseases. Donate here.