We are proud to announce the launch of the Multiple Sclerosis Emerging Therapies Collaborative. The Collaborative – which includes the members of the MS Coalition, the American Academy of Neurology, and the VA Multiple Sclerosis Centers of Excellence East and West – has as its mission:
To develop and disseminate timely, evidence-based resources to persons affected by multiple sclerosis and health care professionals, in order to promote optimal, individualized treatment of the disease by facilitating effective communication and medical decision-making
The emergence of new MS therapies is both exciting and challenging for people living with MS, the clinicians who treat them, and the organizations that serve them. The groups that form this Collaborative are looking to speak with a single voice in an effort to promote understanding and reduce confusion within the MS community concerning newly emerging MS therapies.
The Collaborative has established a dedicated, rapid-response website (www.ms-coalition.org/emergingtherapies) that will present downloadable information sheets for professional and lay readers about each newly-approved treatment. The information sheets, which include the known benefits and risks of each treatment as well as answers to commonly-asked questions, are written to complement one another in order to promote clinician-patient communication. Users can direct questions to
firstname.lastname@example.org. The fingolimod (Gilenya) information is now available on the site, and the Collaborative looks forward to adding additional resources in the near future.
Each of the participating organizations will be promoting this unique resource to its constituents and providing a link to the Collaborative website.
Here is an introduction to the groups participating in this exciting new venture:
- MS Coalition: Founded in 2005, the MSC is a collaborative network of independent MS organizations whose vision is to improve the quality of life for those affected by MS. Coalition members include:
- Accelerated Cure Project for Multiple Sclerosis: a national nonprofit dedicated to curing MS by determining its causes. Our repository contains samples and data from people with MS and other demyelinating diseases. Samples are available to researchers who submit all data they generate back to the repository to be shared with others.
- Can Do Multiple Sclerosis): a national nonprofit organization and innovative provider of lifestyle empowerment programs for people with MS and their support partners. We empower people to see beyond their MS, giving them knowledge and confidence to adopt healthy lifestyle behaviors, actively co-manage their MS, and transform challenges into possibilities.
- Consortium of Multiple Sclerosis Centers (CMSC): provides leadership in clinical research and education; develops vehicles to share information and knowledge among members; disseminates information to the healthcare community and to persons affected by multiple sclerosis; and develops and implements mechanisms to influence health care delivery.
- International Organization of MS Nurses (IOMSN): the first and only international organization focused solely on the needs and goals of professional nurses, anywhere in the world, who care for people with multiple sclerosis. Mentoring, educating, networking, sharing – the IOMSN supports nurses in their continuing effort to offer hope.
- Multiple Sclerosis Association of America (MSAA): a national nonprofit organization dedicated to enriching the quality of life for everyone affected by MS. We provide support and direct services such as a bilingual Helpline, equipment, MRI assistance, and education through events, publications, and website. Our organization strives to help each individual on a personal level.
- Multiple Sclerosis Foundation (MSF): has as its mission to provide nationally-accessible programs and services to those affected by MS, which in turn, helps them maintain their health, safety, self-sufficiency, and personal well-being. We strive to heighten public awareness of MS in order to elicit financial support while promoting understanding for those diagnosed.
- National Multiple Sclerosis Society: is a collective of passionate individuals who want to do something about MS NOW – to move together toward a world free of multiple sclerosis. The Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS.
- United Spinal Association: a national organization advocating for people with spinal cord injuries and disorders, including 5000 members with MS. Issues include health care, home and community services, and medical equipment access. We sponsor an MS Fellowship at the University of Washington.
- American Academy of Neurology (AAN):an international professional organization, established in 1948, with more than 22,000 neurologists and neuroscience professionals dedicated to promoting the highest-quality patient-centered neurologic care.
- Veterans Administration MS Centers of Excellence (MSCoE): committed to serving the health care needs of approximately 40,000 Veterans with MS. The Centers of Excellence, which are located in Seattle and Portland (MSCoE, West) and Baltimore (MSCoE, East), are organized around Clinical Care: Education and Training; Research and Development; Informatics and Telemedicine.