MS Organizations: Support and Patient Programsby Lisa Emrich Patient Advocate
In addition to MS organizations who are focused on research and registries, we have several organizations which offer support and services to folks affected by multiple sclerosis. The following provides an introduction to the services provided by the more prominent nonprofit organizations in the United States which serve on a national level.
Living with MS means the road to wellness is more than treatment of the disease. Equally important are health and wellness strategies, a strong support network of family and friends, satisfying work and leisure activities, a meaningful place in the community, and adequate attention to one's inner self.
The National MS Society offers an extensive variety of programs, services and resources for people living with MS, including family members, caregivers and other members of their support systems. Local Society chapter programs vary from one community to another. To learn more about all of the programs offered in your community, please contact your chapter.
For the Newly Diagnosed:
...and MORE! Visit NMSS programs and services for more information.
The Multiple Sclerosis Foundation (MSF) is a service-based, non-profit organization established in 1986. With national headquarters in Fort Lauderdale, Florida, the MSF serves the nation from one central location. Networking with independent, grassroots organizations gives us a local presence in communities around the nation. Funds raised by the MSF go directly into services designed to improve the quality of life for people with MS.
The Multiple Sclerosis Foundation provides a comprehensive approach to helping people with MS maintain their health and well-being. We offer programming and support to keep them self-sufficient and their homes safe, while our educational programs heighten public awareness and promote understanding about the disease.
Our resources assist people who have MS, their families and caregivers, regional support groups, and healthcare professionals. Access to our programs and services is available through our interactive web site or our national, toll-free helpline staffed by caring caseworkers and peer counselors. Our priority is to serve with empathy, resourcefulness and responsibility.
All MSF services, as well as information, literature and subscriptions to our publications are provided free of charge. Some programs are needs-based and dependent on income and other factors. The MSF neither sells memberships nor requires participation in fund-raising activities by individuals or support groups.
The extensive array of patient services offered by MSF include:
The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization dedicated to enriching the quality of life for everyone affected by multiple sclerosis. MSAA provides ongoing support and direct services to these individuals with MS and the people close to them. MSAA also serves to promote greater understanding of the needs and challenges of those who face physical obstacles.
Since 1970, MSAA's philosophy and efforts have focused on improving the quality of day-to-day life, for everyone affected by MS. MSAA invites everyone within their community to join our cause - working together to break down barriers (physical, emotional, and social) and build up hope for those who are physically challenged.
While MSAA's national office serves clients throughout the United States, regional and field offices can provide additional assistance locally and in several surrounding states. Individuals interested in any MSAA activities may contact their nearest office for more information.
The effects of MS vary widely from one individual to another, thus the needs of the MS population are diverse. For this reason, MSAA offers five categories of programs and services aimed at providing individualized assistance to people with MS, their families, and their care partners. In addition to these programs and services, MSAA provides valuable information through its quarterly magazine and other literature.
MSAA offers the following programs and services:
The primary mission of MSWorld, Inc., established in 1995 by MS patient Kathleen Wilson, is to end the isolation that people feel when diagnosed with a chronic illness, specifically multiple sclerosis - “Patients Helping Patients®.” MSWorld provides global Internet community support to people with multiple sclerosis. Our sole mission is to create a safe, informative, useful and fun place for people with MS to meet, share ideas and gain useful resources to keep them moving forward while living with MS.
MSWorld, Inc. maintains a well-trained staff of volunteers to moderate live chats, message boards and other resources to provide a safe and useful online community. Here at MSWorld, we are interested in quality of life gained through an active community, shared resources, and the use of new technologies to assist people with multiple sclerosis.
For years, MSFriends, an initiative founded by Amelia Davis, a person living with MS, provided peer-to-peer telephone support 24/7 to people with MS who needed to talk to someone. The National MS Society took over MSFriends and has incorporated it into their peer-to-peer programs. The tollfree helpline remains the same - 1-866-msfriends (1-866-673-7436) - but the hours may differ.
Can Do MS, formerly The Heuga Center for Multiple Sclerosis, is an innovative provider of lifestyle empowerment programs for people with MS and their support partners. A national nonprofit organization, we empower people to move beyond their MS by giving them the knowledge, skills, tools and confidence to adopt healthy lifestyle behaviors, actively co-manage their disease and live their best lives.
Since 1984, we’ve been at the forefront of promoting the culture and belief that everyone living with MS has the power to live full lives. The organization has helped thousands of people living with MS transform challenges into possibilities in health and life. In 2008, we provided programs and services to more than 10,000 people.
Can Do MS offers a range of individualized experiential learning formats, including multi-day workshops, weekend seminars, online resources and peer support programs. We compassionately equip individuals with the expanded knowledge, skills, awareness and confidence to become active co-managers of their health. We enhance and complement traditional models of care by focusing on the physical, interpersonal, emotional, intellectual and spiritual aspects of living with MS.
Can Do MS has a network of more than 100 health care professionals from around the U.S. and Canada, including exercise physiologists, nutritionists, neurologists, physical and occupational therapists, physicians, psychologists, speech/language pathologists, registered nurses and other health care specialists. Our health care professionals are dedicated to teaching people with MS and their support partners how to take control of their lives and health by focusing on what they can do and live their best lives. In 2009, Can Do MS formed a collaborative partnership with the National Multiple Sclerosis Society to align resources and more effectively improve the quality of life of people with MS and their support partners.
(updated July 2015)