In 2005, the Society targeted four areas for MS research, selected by our scientific advisors to improve the care, treatment and understanding of multiple sclerosis. In November of 2004, the Society made a bold promise: we would raise $32 million over five years to support these four research initiatives.
Thanks to thousands of supporters, these critical funds were raised and the targeted areas filled crucial gaps in our understanding of MS. This initiative proved to be a challenge and an inspiration—a promise that is not only being kept, but one that has profoundly impacted MS research as it moves forward.
Promise: 2010 -- The MS Lesion Project
Because people with MS experience the disease in so many different ways, most MS investigators question whether a single therapy will be found to work for all. Understanding patterns of MS damage in lesions—spots of brain tissue where myelin has been stripped from nerve fibers—is the focus of the path-breaking international collaboration known as The MS Lesion Project.
Claudia F. Lucchinetti, MD, with collaborators in the U.S., Germany and Austria, launched the most extensive attempt ever to map and understand the meaning of MS damage in the brain. They amassed an unprecedented collection of tissue samples from more than 1,000 people with MS, obtained from brain biopsies (a rare procedure) or autopsies. By identifying four distinct kinds of lesion patterns, the collaborators have:
Changed the way researchers think about MS.
Discovered that unique antibody patterns are associated with different lesion patterns, which could lead to a blood test to help inform treatment decisions.
Made significant gains in understanding when lesions form and how tissue is damaged, opening up new possibilities for strategies to stop that damage.
An additional grant from the National Institutes of Health is making it possible for these investigators to continue making discoveries about variations in MS that may ultimately drive treatment decisions and increase our understanding of the cause of MS.
Promise: 2010 -- Nervous System Repair and Protection
Solutions in MS means not just stopping the disease but repairing damage and restoring lost function. Promise: 2010 provided the largest grants in Society history to launch an international effort to address this need. More than 70 leading researchers in four teams in the U.S. and Europe participated.
Outcomes included --
Groundbreaking progress developing cell transplantation techniques, which may ultimately enable nervous system repair.
Development of better imaging methods to track the success of attempts at repair and protection in clinical trials.
Successful induction of “stalled” myelin-making cells in lab dishes to begin producing myelin using molecules that have potential as future therapies.
Advanced knowledge for further research into repair and protection by publishing more than 180 research papers on nervous system repair in MS.
Because of this targeted progress, the stage is now set for clinical trials of nerve-protecting therapies and for advanced studies of cell transplantation and other strategies for stimulating repair in MS. These projects formed a platform that continues to generate promising results, and investing in this critical area remains a top priority for the Society. This is important not only for restoring function, but many believe that re-establishing the protective myelin coating on the wire-like axons will shield them from further harm.
Download (PDF) a report evaluating the outcomes of this important initiative.
Promise: 2010 -- Pediatric MS Centers of Excellence
Some 8,000–10,000 children have MS! Another 10,000–15,000 experience what may be MS symptoms.
With Promise: 2010 funding, the Society established the first-of-its-kind network of six Pediatric MS Centers of Excellence to provide comprehensive evaluation and care to children with MS and related central nervous system demyelinating disorders.
Outcomes -- Project members:
Provided multidisciplinary care to more than 1,150 kids and their families.
Developed consensus on how to diagnose and care for kids with MS.
Developed specialized programs and resources for kids, parents, school personnel and healthcare professionals.
Now the way is clear for deeper research into the triggers of MS in young children, which may clarify the cause of MS in adults as well. Children and their families will continue to receive expert care in these six centers. In 2013, the National MS Society committed an additional $2.5 million to support research by the Network of Pediatric MS Centers, now expanded to nine centers. Funding for the nine-center network provides essential infrastructure to facilitate research, including searching for the cause of MS by studying risk factors for the disease in children, close to the time of exposure. This support for data coordination can be leveraged to answer other important research questions to advance our understanding of the disease in this most vulnerable group.
Learn more about pediatric MS.
Promise: 2010 -- The Sonya Slifka Longitudinal MS Study
The first of its kind in the U.S., this study follows 2,000 Americans with MS. Overseen by Sarah Minden, MD, the study integrates clinical information, health-care practices and socio-economic data to track what happens to people living with MS over time. The study name honors the mother of long-time leadership volunteer Richard Slifka, who lived with MS.
Outcomes -- Findings to date are enhancing the Society’s advocacy, research and treatment efforts. Data from the study has:
Been used by the Social Security Administration in preparation for the introduction of the Medicare Part D prescription drug benefit, enhancing access to MS therapies.
Helped in the passage of state legislation, resulting in better health care and assistance for severely disabled people with MS.
Been used to understand unmet needs of people with MS and new initiatives—such as outreach to enhance community-based care for those living with the disease.
Been used to discover that people with MS had significantly lower health-related quality of life than the general population as well as those with diabetes, congestive heart failure, heart attack, high blood pressure or depression.
Helped determine that people with MS who see neurologists were more likely than those who see other providers to receive treatment with disease-modifying agents and to see rehabilitation specialists and urologists.
The crucial information gathered from this study is still being used today by investigators who can apply for access to the database to answer questions about quality of life, rehabilitation, prognostic indicators, the cost-effectiveness of therapies and many others.