| This study traces how, during the period of June, 1992, through March, 1994, a once private one-family foundation was transformed into a participatory membership organization. The methodology used is Action Research to create a Matrix Model. The author/researcher has served as the Executive Director of the Dystonia Medical Research Foundation since June, 1992, and is the participant observer recording the actions. With the President, officers and Trustees, the appointees, and the staff members, she initiated the structure, improved upon the communications, and expanded the programs and offerings of the Foundation to the membership, its stakeholders, and the interested public.;The data gathering includes a needs assessment, a survey of Movement Disorder organizations, and various excerpts from the official minutes of meetings of the Trustees, the Coordinators, and the staff. Also included are the 1994 Symposium program with agendas for subgroup meetings and a sample recognition certificate, the 1994 approved bylaws, the budgets, the Grant Award lists, the Executive Director's reports, and the job descriptions and policies as of March, 1994.;Further appendices include the title pages of publications of the 1992 Annual Report, sample brochures, the Bibliography of Journal Articles as well as two major publications by the author/researcher, and the "8 to 18" Guidebook by dystonia patients.;Consistent with action research, the work is ongoing and updated and periodically evaluated in order to effect improvement and desired changes by the membership.;Using a force-field analysis, the author-researcher notes the restraining forces of having few leaders and few staff members, and she notes the physical limitations of the members. She attributes the successes chiefly to the collaborative working relationship with the President, the willingness of the staff to perform any and all functions, and the acceptance and participation by the Trustees of the reorganization of the Foundation into a matrix system during the period of June, 1992, to March, 1994. |
