- Many hospitals, medical clinics, churches, public utility companies, and libraries have meeting rooms they offer at no charge. Restaurants will frequently provide a meeting room at no cost when lunch is ordered.
- Meetings can be purely social, discussion-centered or speaker-centered. Talking to others who are coping with the same disorder can be most satisfying. For discussion meetings, the KIT Representative should have a springboard topic, something to stimulate conversation. Be sure everyone has a chance to speak and that no one takes on an “authority” role. Breaking out into groups based on the type of myositis is helpful and allows more focused and intimate conversations among members with similar concerns and challenges. Click here for examples of meeting agendas .
- For speaker-centered meetings, look for appropriate speakers within the community who will be willing to provide a half-hour talk with a question and answer period afterwards. Some speaker and topic suggestions are listed below.
- Speaker Suggestions: rheumatologist, neurologist, nutritionist, speech or physical therapist, pharmacist, home infusion nurse, representatives from: assistive device companies, home infusion providers, caregiving agencies, fundraising event participants, etc.
- Topic Suggestions: disease specific information, caregiving, dysphagia, aids to daily living, fundraising events, occupational therapy, Social Security and Medicare benefits, etc.
Plan your meetings far enough in advance that you have time to find a speaker and notify your KIT members.
- A simple monthly or quarterly newsletter is another good way to communicate with your area members. The newsletter can take the form of a handwritten or photocopied personal letter, or you can use a computer to produce a simple but easy-to-read newsletter.