How can MSers get involved in trials?
Getting Involved in the MS Community
An estimated 350,000 to 500,000 people in the United States have multiple sclerosis (MS), a complex disease to manage. Symptoms affect each person differently and may also come and go. "This unpredictability creates added stress on both the person with multiple sclerosis and his or her family and caregivers, making it important to get support from others who understand," says Kasey Minnis, director of operations and communications at the Multiple Sclerosis Foundation (MSF), an organization with a network of independent MS support groups throughout the United States.
The complexity and unpredictability of multiple sclerosis also makes it difficult for the general public to understand the disease. And without understanding, Minnis says, it's difficult to secure funds for multiple sclerosis research to find a cure as well as provide support services. "By speaking out and getting involved with advocacy efforts, those whose lives are affected by multiple sclerosis can help to create more public support," she says.
Connecting With the National MS Community
One way to get involved is by participating in . During March, MSF offers free educational programs and awareness kits to raise public awareness. MSF also offers a calledMovers & Shakers, which is packed with resources to help people improve their advocacy skills and get involved with important multiple sclerosis issues.
"We encourage people with MS to get to know each of the MS organizations and what they offer," Minnis says. Visit the MS Coalition Web site for a complete list of organizations that provide multiple sclerosis support.
"Through the coalition, all of the organizations work together to accomplish common goals and to eliminate duplicate efforts," Minnis explains. "While some organizations may concentrate on research, another may concentrate on coping skills, or, as in the case of the MSF, direct assistance to people with multiple sclerosis. It’s beneficial for individuals whose lives are affected by MS to be aware of and keep abreast of the work of all of these organizations."
Getting On Board
Nan Luke, 55, of Laguna Beach, Calif., who was diagnosed with MS at age 30, was “in the closet” about her diagnosis for several years. "As a practicing litigating attorney in the local law community, I finally decided it was time to reach out,” Luke says. “I didn’t want to sit around moaning about the unfairness of multiple sclerosis — I was ready to come to grips with it and decide how I could help."
Luke was pleasantly surprised when she attended a local MS Society support group meeting. She thought it might be a free-form format with people complaining. Instead, "it addressed all kinds of issues, from coming to grips with having MS, to choosing doctors and treatment, dealing with marriage and intimacy issues, and coping with work situations," she says. "It was very well organized, and there was something in it for everyone."
Luke was eager to get involved with the organization and decided to use her work experience by presenting legal workshops on disability issues in the workplace, housing, and other areas.
She was invited to join the board of trustees of a National MS Society regional chapter and volunteered to serve on the chapter’s Government Relations Committee (GRC). "This was a great opportunity to learn, facilitate, and help GRC members learn the National MS Society's mission, to be a part of the MS California Action Network (which focuses on MS advocacy), and to discover that advocacy and activism is not screaming or fighting, but building relationships with policy makers and educating them about multiple sclerosis and those who struggle with it," Luke says.
Luke also serves as a patient advocate at University of California at Irvine's stem cell lab. "The lab directors graciously invite people with MS to visit the research lab, host GRC meetings, and generously share the hope of multiple sclerosis research and a cure," she says.
As a patient advocate, Luke says her role is to encourage others with multiple sclerosis and to educate policy makers on how MS impacts people's lives and share their concerns. She also encourages MS researchers to continue their work.
"It’s unbelievably energizing and hopeful to be working toward a multiple sclerosis cure without a medical or science degree," Luke says.
How You Can Get Started
To get involved in the MS community, Minnis suggests these steps:
- Learn about the various multiple sclerosis organizations to see what resources and channels for involvement are open to you. Visit the MS Coalition Web site for a list of these organizations.
- Get in touch with other people who have MS. The MSF’s Facebook group is a good place to start. Learn how they’re involved and how you might support their efforts.
- Decide where your skills can best be used. Are you a good listener? Perhaps you can start a support group in your area. Are you a great organizer? Maybe you’d like to arrange a fundraiser. Are you a wonderful writer? You might start a letter-writing campaign to your representatives in support of legislation that affects people with multiple sclerosis. Contact any multiple sclerosis organization to see how you can get started. Sidney Wittenberg, associate vice president of volunteer leadership development at the National MS Society, suggests using the online to learn about your local chapter needs and what matches your interests and skills.
- To take your advocacy a step further, apply to be an MSF Ambassador. Individuals who are chosen participate in specialized leadership training to serve as resources for the MS community in their local area.
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