Running a childhood cancer foundation: 12-month road map broken down in quarters

Tips for a 12-month road map broken down in quarters (3 months) 

Quarter ONE (1-3 months)

This phase is about getting your house in order. If this is weak,  everything else becomes unstable. 

- Register your foundation, NGO, NPC, or charity according to your country’s legal  framework. 

- Appoint a skills-based Board that can assist you with legal, financial, healthcare  (paediatric oncology insights) and fundraising business. Develop key policies to protect  you when things go wrong: Financial Policy, Human Resources Policy, Safeguarding Policy (critical for children), and Conflict of Interest Policy. 

- Define your core business. Avoid being everything for everyone – especially in the  childhood cancer community. Be clear who you serve, where you operate and what gap you fill. For example, are you offering psychosocial support for parents or  accommodation support during treatment, etc. 

- Do a needs assessment by engaging with the medical team, parents /caregivers or  other existing childhood cancer foundations, NGOs, charities in the childhood cancer community in your country. Do not duplicate services but rather ask what is missing or failing right now and how your foundation can fill the gap or enhance paediatric oncology services for better patient outcomes. 

Quarter TWO (4-6 months)

This phase is about testing something real, small, and  meaningful. 

- Start with one manageable intervention for example transport assistance, practical  support such as carebags or nutritional support. You will need to plan carefully. Once  you decide on the activity, choose what you want to deliver, what changes you want  to see and then pilot the programme. Do not be afraid to pivot should you need to  change the activity to ensure better outcomes. 

- You cannot operate alone in this sector. To be sustainable, you will need to build  strategic partnerships with the Department of Health, the paediatric oncology unit,  social workers, volunteers and or other existing foundations, NGOs, or charities. 

- To safeguard your organisation, ensure that you have written agreements with the  hospital management and or paediatric oncology unit. Set out clear roles and  responsibilities to avoid stepping on toes. Remember, you need to focus on the core activity and not get distracted by requests not aligned to your intent. 

- Have a basic monitoring and evaluation (M&E) system in place from the start of your  programme to track impact and to gather data. Information about the number of  families you supported, and the type of support provided will assist you plan ahead. 

- Use simple tools like feedback and intake forms captured on a basic database or Excel spreadsheet to determine short term outcomes. 

Quarter THREE (7-9 months)

This phase is about funding and operational stability. Most new and upcoming foundations struggle during this phase. Funding stability secures  income. You cannot only rely on goodwill, gift in kind donations or fundraising events.  Financial insight expands reach and growth. Break trust and you will lose donors. Operational stability is the ability to continue operations including providing essential  services without interruption during stress. 

- Diversify income streams. Recurring funds from corporates and individuals is  important to plan ahead. Although once off donations help, recurring donations are the  backbone of sustainable fundraising for nonprofits. 

- Prepare a generic, but strong concept note or fundraising proposal. Include a 1–2- page programme summary and a basic budget. Align with the legal fundraising and financial requirements of your country.

- When you are transparent, and able to provide clear financial reports, donors will trust you and commit to regular funding. Every financial decision should protect, sustain, and grow your organisation. 

- Apply strong financial systems from the beginning and ensure that you have a clear  finance policy in place. Open a bank account and track your finances monthly. Do a  monthly forecast for one calendar month and a cash flow forecast for at least 30-90 days. Flag variances immediately and report them to the board. 

- During this phase strengthen internal capacity. Clarify staff and volunteer roles, and  avoid over-reliance on volunteers, especially for specialised services. The last thing you  want to do at this stage is to confuse your beneficiaries, for example if a social worker is  part of the multi-disciplinary team and a volunteer (even if qualified) he/she cannot  provide professional services to the beneficiaries. Avoid mixed messages that might  confuse parents. 

Quarter FOUR (10-12 months)

This phase is about consolidation and growth readiness. 

- During this phase you should honestly ask yourself what worked, what did not work and  are you actually making a difference. Do a SWOT analysis to determine your strengths  (what worked and what impact your programme has), be honest about your  weaknesses or areas where you did not perform well. Look for new opportunities and  pivot or change your programme if needed. Discuss honestly threats that could harm your programme or reputation. Use feedback from your beneficiaries, volunteers, and  the hospital staff. 

- At the end of year one you should be a registered and compliant organisation, have active partnership with at least one hospital, a well-designed and functioning  programme, be able to provide evidence of impact and have basic financial records. 

- You can now begin to add new services or expand your current programme. If needed and if your organisation is strong enough, you could start to expand geographically.  Growth should be based on evidence, funding, and capacity and not pressure or  emotions. 

Read more 

- United Nation Development Programme. 2009. Handbook on Planning, Monitoring and Evaluating for Development Results. https://digitallibrary.un.org/record/671515?v=pd

- Bridgespan Group. n.d. Guide to using a program strategy map.  https://www.bridgespan.org/getmedia/fadc57f0-e6ad-4a70-a58fff73083a3741/guide-to-using-a-program-strategy-map.pdf

- James Noble. October 2019. Theory of change in ten steps. https://npproduction.wpenginepowered.com/wp-content/uploads/2019/10/Theory of-Change-10-Steps Updated.pdf?_gl=1*3brfid*_ga*Mzc1NDU2NDAyLjE3Nzc3MTc5NDE.*_ga_5Q3PNDT P66*czE3Nzc3MTc5NDIkbzEkZzAkdDE3Nzc3MTc5NDIkajYwJGwwJGgw 

- Managers who lead. A handbook for improving health services. 2005. Management  Science for Health. Cambridge Massachusetts. https://docslib.org/doc/235495/managers-who-lead-a-handbook-for-improving health-services 

- Aid Delivery Methods. Volume 1. Project Cycle Management Guidelines. March  2004. European Commission Brussels. https://international partnerships.ec.europa.eu/document/download/f7ed20c4-5fc2-4ed7-b54c 0805e4ed952d_en?filename=methodology-aid-delivery-methods-project-cycle management-200403_en.pdf 

- Jeanne Bell, et. al. 2010. Non-profit sustainability. Making strategic decisions for  financial viability. (The total pages displayed will be limited; however valuable information). https://books.google.co.za/books?id=qBHS9oOu9NkC&pg=PA92&source=gbs_sele cted_pages&cad=1#v=onepage&q&f=false 

- Jody Zall Kusek. Ray C. Rist. 2004. Ten Steps to a Results Based Monitoring and  Evaluation System. The World Bank. https://documents1.worldbank.org/curated/en/638011468766181874/pdf/296720P APER0100steps.pdf