Framework for a proactive parent support group: the Syracuse cystic fibrosis model

Many support groups are organized and run according to goals and by-laws set by facilitators. This article introduces a model in which all goals and by-laws are created by the parents based on their group's specific needs. It also describes a "proactive" approach in which the group members identify projects or problems in their community and collectively form a plan in an attempt to improve these situations. This model is based on the real-life experience of a cystic fibrosis parent support group in Syracuse, New York. Lessons learned from this model can be applied to other parent support groups.