I want to start a childhood cancer foundation

Many of Childhood Cancer International (CCI) members established sustainable and successful foundations. You are welcome to reach out to CCI for mentorship and knowledge sharing. You don’t need to reinvent the wheel. Remember, you are not alone and CCI is there to support and guide you.

Here’s a step-by-step approach you can follow to start your foundation, however, do not hesitate to reach out for more information!

1. Define your mission and scope. 

• Will you support families (emotional, practical or both)?
• Will you fund research?
• Will you run awareness campaigns or early detection and or public education?

2. Research existing organisations

• Look at CCI members’ websites and reach out to members for information to understand how they operate. There are examples of high (HICs) and middle  (MICs)– as well as low income (LICs) counties. 
• Identify whether you want to complement or partner with existing organisations.

3. Assemble a founding team

• Ideally include parents, survivors, medical professionals, legal and finance people as part of your founding team.
• Decide on a leadership structure for example a steering committee and a board.

4. Choose a legal structure

• Register with the relevant government body; adhere to your governments legal framework and familiarise yourself with financial and legal compliance to establish your governance status. 

5. Create a business and operational plan

• Develop a strategic plan with the focus on which programmes you want to offer whether child and family support, transport assistance, accommodation, awareness, etc. You need to decide what the impact of your programmes will be on the community you intend to serve, why you want to do it, how you are going to do it and what inputs your will need to be successful 
• Create a reachable budget and a fundraising strategy to sustain your programmes. 

6. Fundraise

• Build partnerships with corporates, hospitals, and like-minded organisations to strengthen your ask. 
• Know the why  and have an “elevator pitch” to sell your organisation’s impact on the community. 
• Research successful fundraising events and adapt it to your country before duplicating other successful fundraising events and campaigns.  

7. Start small and build programmes and services

• Decide which programmes you will pilot.  Plan, pilot, pivot, implement.  
• Use CCI member’s models of psychosocial and practical support programmes

8. Governance and accountability

• Establish a board, be transparent and accountable about your income and expenditure. 
• Keep donors and the public informed about your impact by publishing  annual reports and audited finances.  

9. Monitor and evaluate

• Define your foundation’s  key performance indicators (KPIs). For example,  the number of beneficiaries you served, percentage increase in awareness, funds raised per quarter, staff or volunteer retention rate, how many families you served, number of funds raised, awareness reach, programme success metrics (for e.g. reduces abandonment, increase new diagnoses, etc.) 
• Adapt programmes based on feedback and impact.

10. Raise awareness & advocate

• Run campaigns (e.g., “Go Gold” style) to promote childhood cancer awareness. 
• Work with health authorities, public institutions, media and social media to raise awareness about childhood cancer and your foundation. 

Below are some key international references, providing tools and models to help you set up an organisation:

• Childhood Cancer International (CCI) is a global network of childhood cancer organisations.  Connect with us at CCI to collaborate, lean and possibly become a member.
• The World Health Organisation’s (WHO) Global Initiative for Childhood Cancer (GICC)  aims to improve survival and reduce suffering globally. They provide a “CureAll” framework (a “how-to” guide) for policymakers, hospital managers, and programme leaders. You could use the how-to guide to understand essential pillars: centres of care, universal health coverage, treatment standards and monitoring. These pillars could potentially map your foundation’s potential role. 
• The Union for International Cancer Control (UICC)  offers a course to build your team’s understanding of global childhood cancer care. This information could assist new foundations to design their own programmes. Modules include health-system integration, advocacy, governance, and monitoring.
• While not specific to cancer, the Council on Foundations offers a solid guide on the legal and organisational steps for setting up a foundation. This includes a guide to governance, structure and compliance.