For three years after she was diagnosed with multiple sclerosis in 1998, Ann Romney was miserable. An active mother of five, the disease so exhausted her, she could barely get out of bed.
But after that horrible time, Romney, wife of former presidential candidate Mitt Romney, began to bounce back. She has fared well since, supporting her husband on the campaign trail, doing charitable work and playing with her grandchildren.
Despite tremendous advances in medication, doctors still don’t know why the early stage of MS can wax and wane so much, and why some people with MS end up debilitated within a few years and others can continue to thrive for decades.
Romney has volunteered to be one of the first of 2,000 participants in a new study aimed at unraveling that mystery.
“We’re hoping this will serve as a foundation for understanding MS in the modern era in a way that has not been understood,” says Howard Weiner, director of the MS center at the Brigham and Women’s Hospital in Boston and co-principal investigator of the new SysteMS study.
The research is a collaborative effort from the Ann Romney Center for Neurologic Diseases at Brigham and Women's Hospital in Boston; the drug company Biogen, which makes several MS medications; and Google, which will handle the sensor tracking and data analysis. Biogen and Google will cover the undisclosed cost of the multi-year SysteMS study.
Volunteers will wear activity sensors, answer frequent questionnaires and allow deep biologic profiling of their genes, immune activity, blood, urine, saliva and stool.