About Us

Purpose: To support and empower people on their cleft journeys

Vision: We seek to create a future where people understand difference and value the unique contribution individuals make.

Values:

• Being committed and connected
• Promotion Openness
• Keeping our perspective
• Valuing our differences
• Positivity
• Encouragement and support
• Challenging and achieving
• Equity and fairness

Our Strategies

• Develop organisational capacity and sustainability
  • Leadership - build enduring greatness
  • People - right people in right seats
  • Volunteers - recruitment, training, retention - want to stay
  • Roles & responsibilities - clear and accountable
  • Governance - big picture, structure, direction, look and feel
  • Build networks - others to help spread the word and the work
  • Technology - enabler to support strategies
  • FEEDBACK - we want to know what you think - blog this entry!
• Deliver products and services to support cleft journeys
  • Arm Splints - making & getting returns
  • Coffee groups - more often in more places
  • Support Parents - volunteers, managment, training, supervision
  • Future ideas - LOTS - what are yours? Examples, youth programme, events, workshops…..
• Create great outcomes from strong advocacy
  • Philosophy behind good advocacy - Courage, unity, vision, honesty
  • Every stakeholder has a valid voice
  • Leverage of shared goals - understand differing viewpoints. Parents, children, educational professionals, medical professionals
  • Research existing care models and international best practice in cleft care.
  • Co-ordinated approach to systemic, meaningful change
  • DHBs, Ministry of Health, Ministry of Education, International teams, families
• Build awareness and understanding through eduction
  • Website - general information, links to other sites
  • Interactive website - discussion forums, news updates
  • Blue Book
  • Resources - Clancy has a cleft
  • Newsletters
  • Information evenings
  • Future ideas: library, cleft clinic noticeboards, new pamphlets etc etc. What do you think?
• Become great at securing and leveraging funding
  • Funding applications to philanthropic trusts to be planned and ongoing
  • Increase untagged funding sources - widen risk by having more diverse sources of funding.
  • Need to develop fundraising function. Do you have any expertise in this area?