Home | Calendar | Español | Media Room | Shop | Contact Us

Strategic Planning

The Cornelia de Lange Syndrome Foundation engaged NetMark Associates to assist with development of a three-year strategic plan for 2013-2015. The plan process—including interviews of board members, surveys of clients, focus groups and Internet research—culminated in a refinement of the Foundation’s vision, values and mission. Also identified were Critical Success Factors and strategic goals and objectives associated with Foundation projects.


Strategic Goal 1: Improve awareness of the syndrome and the organization.

  • Do annual targeted mailings/email bulletins to health professionals and/or educators offering a free diagnostic checklist and/or education manual.
  • Exhibit at one or more professional conferences per year, such as American Academy of Pediatrics. Examine partnership with CHOP in sharing booth.
  • Develop and execute at least one online multi-audience module per year for next three years.
  • Explore and implement new social media options for implementation.

Strategic Goal 2: Make clinics for all ages more accessible.

  • Add/establish a regional multi-discipline clinic for all ages.

Strategic Goal 3: Provide more opportunities for personal interaction for all ages and all points on the spectrum.

  • Add one additional Foundation sponsored gathering per year for three years for a total of eight.
  • Encourage the building and strengthening of local family networks.

Strategic Goal 4: Increase funding and support for basic science, education and clinical research.

  • Provide annual small grant funding with at least a portion of the funds going to a new researcher.

Strategic Goal 5: Build a strong, sustainable infrastructure through substantially increasing and diversifying revenue to enhance current services and provide for the long-term future as well as recruit, develop and retain skilled staff.

  • Create a culture of philanthropy that engages board, staff and other volunteers in appropriate individual and collective ways
  • Increase funds donated by major investors