Wh
at the SDS/MSA Support Group Provides
The SDS/MSA Support Group is a growing entity devoted to fostering an ongoing relationship between patients, caregivers, family members and physicians. Our goal is to gather information from each group of people involved and disseminate that information to all. The SDS/MSA Support Group is an information center and a "Helping Hand" for affected people. Through various programs, including the continuation of the annual patient/caregiver support group meeting, support of local groups, the toll free help line and the website, the SDS/MSA Support Group can reach many more people in need. The support group also works closely with physicians who are treating the patients as well as those who are involved in the essential research to discover a cause, modes of treatment, and hopefully a cure. The group also would like to reach out to physicians newly involved with the disease. Information about the disease and tips on explaining it to the patient will be provided through several modes, including the website, links to the American Autonomic Society, access to a referral base of experienced physicians, and educational meetings. By sharing information, resources, and support the SDS/MSA Support Group is creating a "Circle of Hope" for those affected by SDS/MSA.
The Shy-Drager Syndrome/Multiple System Atrophy Support Group is the only national charity focused solely on helping people affected by its namesake disease. Because of this, the group has the opportunity to access and disseminate information about the disease throughout America and beyond. The group already has name recognition among the top clinical researchers through its association with the American Autonomic Society. Local SDS/MSA Support Groups do exist in some of the larger cities. However, these local groups are not viewed as competition, rather they are viewed as potential arms of the national group. As a funded charity, the national group will provide the needed support to the patients and others affected by this lonely disease. In addition, the local chapters are being recruited to associate with the national organization, giving the combined group a larger voice.
SERVICES
The SDS/MSA Support Group offers several services to create its "Circle of Hope." All services are provided to accomplish the Support Group's mission of providing "a helping hand" and advocating more research to find the cause and cure for SDS/MSA.
Website: www.shy-drager.org will provide many types of information including: a data bank, organ donor information, reference list and archive of relevant articles, information on ongoing clinical studies, donations, links to relevant sites, physician referrals, and local area support chapters.
Regional Patient/Caregiver Meetings: The main purpose of these meetings are to provide face to face interaction between patients, caregivers, family members, and physicians. Break-out sessions at the meeting include: Q & A with clinicians, patient only session, and caregiver only sessions. In addition, the SDS/MSA Support Group would like to support meetings by local chapters.
Toll-free Telephone Line: We have two toll-free lines (1-866-SDS-4999 and 1-866-SDS-5999) available to anybody affected by SDS/MSA and needing "a helping hand." Currently, Don Summers and Vera James of the Support Group return all calls made to these lines. It is not unusual to spend one hour per call providing help and emotional support to a needy person. The toll-free lines are an important service as it provides year round ear-to-ear support. As the lines get more calls it will be necessary to seek other volunteers to help answer and return calls.
Representation at Physician Meetings: In addition to attending the American Autonomic Society meeting, it is important for the Support Group to attend other physician and research meetings. The SDS/MSA Support Group will have a display booth at these meetings.