Advocacy Organization

Advocacy Organization

Governance Assessment & Plan

As it approached its 40th anniversary, this national advocacy organization continued to serve as the central clearinghouse for information and support for individuals and families affected by a debilitating genetic disorder. It also has partnered successfully with the pharmaceutical industry, had won government and private support for vital medical research and facilitated drug trials that resulted in mitigating the effects of the disease.


The agency’s leadership recognized the need to bolster fundraising, both to meet the goals of a far-reaching strategic plan and to expand its potential in a competitive philanthropic environment. However, members of its intelligent, responsive, hard-working and cohesive board recognized that the organization had plateaued. In addition, many board members’ contributions were more “sweat equity” than financial.


A timely recommendation called for a board with a greater focus on fundraising as well as both greater financial capacity and reach. A governance planning process included a board retreat that helped to foster consensus around the need for changes in the composition of it lay leadership.

Product &

• Led the board to connect the organization’s ambitions with the need for new human and financial resources to achieve them.
• Provided guidance for a new era in governance, including recruitment, performance, and engagement policies.
• Recommended consolidating two separate boards: one concerned with governance, the other with endowment management.