Support for Individuals and Families

Support for individuals and families takes many forms. The forerunners of today's advocacy groups got their beginnings as support groups of various kinds, whether assisting new immigrants in the logistics of settling in their adoptive country or helping individuals cope with disease. Today's advocacy group can be a sophisticated organization, involved in everything from developing research protocols to midwifing legislation, but it takes its mandate from the same place as the most humble support group: ensuring that individuals and families with a particular trait do not feel that they are alone.

Support can involve education and advocacy, but in this section, we'll focus on direct support to individuals and families. At its most basic, a support group provides a central point of contact for individuals and families united by a common interest. It provides concrete proof that an individual is not alone. It can also provide a clearinghouse for information or updates relevant to an interest.

Your group's support activities can include:

• Placing information packets with providers likely to be a first point of contact for affected individuals and families, and otherwise advertising your existence
• Connecting individuals or families with "mentor" members who can help them acclimate to new information or new tasks
• Holding regular meetings, in person or online, where individuals and family members can share information
• Maintaining a contact list of members
• Publishing a newsletter
• Maintaining a telephone hotline
• Maintaining an electronic mailing list
• Holding periodic events where individuals and families can relax and socialize, like summer picnics or winter holiday parties

Support, of course, is not just making contact and getting basic information out. It's an ongoing process, whose scope and specifics change with the changing needs of membership. Where a newly diagnosed person may be hungry for basic information, a family that has integrated the care and support required for an affected family member may wish to just dip into a community from time to time, to socialize with others that understand but not necessarily focus directly on the condition.

In fact, support functions are essentially "networking" activities. In networking, you keep track of who you know and link yourself or others with people who can help you (or whom you can help in return). People sometimes think of networking as something they have to do to get a job or something they do on the job in order to "get visibility" or preserve options at the workplace. These are the same things you'll need to do for your organization - and help your member do for each other.

Offices or Chapters?

Larger, older lay advocacy groups often have chapters. These have varying degrees of legal connection to the parent organization and different degrees of autonomy. Some of these groups and some new ones decided that there were too many legal and accounting difficulties with chapters and moved to other structures - such as regional support groups, offices, network contact, and other less formal entities. Both chapters and less formal structures work for different groups for different reasons.

» Conferences, Workshops, and Meetings for Affected Individuals