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Annual review 2019

Our strategy

The Swedish Childhood Cancer Fund is well prepared for the future. In this section, Secretary-General Thorbjörn Larsson talks about new strategies for research, partnerships, lobbying and fundraising.

The most important tasks of the Swedish Childhood Cancer Fund are to fund research that results in the goal of no child having to die of cancer; that children, their families and friends get the support they need in a difficult time of their lives; and that those who survive get all the support they need.

Carla - When Carla had just started school, a tumour was discovered in her brain. After treatments and operations, she is now back in school. But to make it through the school day, she needs regular breaks. During these breaks, Carla makes beaded bracelets, which she sells and donates the money to the Swedish Childhood Cancer Fund.

We are now developing a new strategy for funding research, with the aim of focusing all research on the goal that all children diagnosed with cancer will survive and have lives free from complications. During the course of 2019, an international committee examined how our funds should be allocated between services, projects and infrastructure, and how an organisation should be comprised in order to create the best prospects for achieving these goals.

Our excellent fundraising results allow us to lay the groundwork for other crucial steps for the future. The research and work of supporting the affected families can and should take more space. One key goal is also to transform the Swedish Childhood Cancer Fund more clearly into a lobby organisation that points out and suggests solutions to problems in medical and social care above all.

Team Rynkeby – In July, the cyclists in Team Rynkeby – God Morgon rolled into Paris, marking the end of the 2019 fundraiser for the fight against childhood cancer. The efforts of the Swedish cyclists resulted in a record SEK 41.1 million to the Swedish Childhood Cancer Fund.

One of the organisation’s strengths is its local ties throughout the country. Six regional associations have direct contact with the nitty-gritty reality that one child a day is diagnosed with cancer. The regional associations can meet needs and initiate new support measures that are directly linked to real needs. There is great potential in the interaction between the Swedish Childhood Cancer Fund and the regional associations. For example, we can create greater opportunities for similar support to those afflicted nationwide.

To pool our resources and stimulate new thinking, we need more money. That is why the Swedish Childhood Cancer Fund is focusing on digital fundraising channels as well as large donations and philanthropy.

Profeel – For many of Profeel’s customers, as well as their staff, the auction has become the highlight of the year. The 2019 auction brought in an astonishing SEK 670,120 to the Swedish Childhood Cancer Fund.

Many people – the children with cancer themselves, their families and relatives, politicians, decision makers and the general public – all need to know more about children and cancer. Active information and lobbying campaigns are what is needed. Thanks to our organisational and financial independence, we have every opportunity to be a stable lobby organisation in medical and social care as well as schools. We want our lobbying to contribute to a change in society that looks out for the best interests of children with cancer, their families and those with little power.

There is great potential in partnering with others to achieve this goal. Our financial strength creates a potential for partnerships well outside Sweden’s borders. In 2020 we will take the first steps towards a well-crafted strategy for our international engagement.

”Looking forward, I’d like to see us investing more in the mysteries that seem unsolvable – that we tackle the really difficult tasks”

- Thorbjörn Larsson, Secretary-General

Research and training – Great need for new therapies

Our work in the research and training mission is largely about the long-term perspective and many small pieces that need to come together. At the same time, we live in the midst of a medical and digital global expansion phase. All this means that we now have the opportunity to support more international research projects and collaborations.

The medicines and therapies we have today are not enough to ensure that all children with cancer will survive without complications. Long-term measures have led to a survival rate of 85% in paediatric cancer today. But not all diagnoses show the same positive development. For example, no children diagnosed with pontine glioma survive today.

As survival rates increase, so does the number of survivors living with late complications. The need for research to develop new, milder medicines and to treat the complications that affect survivors is overarching. Refined diagnoses, new gene and cell therapies, immunotherapies, tailored precision medicines and new technologies give hope for conditions that were previously very difficult to treat.

The continuous efforts in the research and training mission are based on our annual research funding offers, in which all of the nation’s researchers can apply for funding for their specific projects. Our biggest offer of funds is in the autumn, and we actively strive to boost the number of applicants as well as the volume of funding.

To work towards our vision, while prioritising areas where we have the potential to make a difference, we will develop a new strategy for research funding in 2020 that will help us to ensure that our initiatives meet real needs and provide real benefit.

We need to strengthen the role of the patient in the development of new medicines and therapies, and get patients access to them. For example, children currently do not have access to new cancer medicines on the same terms as adults. Sweden needs to be promoted as an attractive country to hold clinical trials in, to ensure that our patients can participate in trials of new medicines. Health care and research must work better together to ensure faster implementation of research results that benefit patients.

Increasingly, pharmaceuticals and treatment protocols are being developed through major international clinical trials. The demand for high-quality research infrastructures across national borders (such as biobanks and databases) is increasing. In addition, the costs of increasingly expensive and complex technology need to be shared by multiple actors, not necessarily just in Sweden. This is why we need to be active in an international arena, working with other players in the field of childhood cancer to develop paediatric cancer research and research infrastructures.

Advice and support – Helps cancer patients in the short and long term

Childhood cancer patients and their family members attest to the strategic importance of our advice and support activities. As Sweden’s single largest player in the fight against childhood cancer, it is natural that affected families turn to us. It is an enormous responsibility and a task that we do not take lightly. It is therefore crucial that we are extremely ambitious in our advice and support efforts, and that we successfully balance these measures against our other missions.


The strategic questions in the mission are largely about what kind of support we should prioritise and how we can best provide childhood cancer patients, their families and survivors with the advice they need. People are different, and their need for support can vary widely. Our job, therefore, is to try to meet all of the wishes and expectations people have of us. These important issues are part of our long-term strategy work, in our annual planning and in the follow-up of our initiatives and activities.

Our advice and support activities include funding consulting nurses, whose job is to serve as a link between the child and the community, in part by facilitating coordination with the child’s school. Another example of initiatives in this mission are our camps and other residential activities in which family members and school staff can learn more about childhood cancer and how we can help each other in various ways.

Childhood cancer affects the whole family. Childhood cancer affects families in all social classes and ethnicities. Childhood cancer affects families throughout the country. That is why the Swedish Childhood Cancer Fund’s digital conversational support initiative has been so popular. In 2020 it will be expanded to everyone who is affected by a childhood cancer diagnosis.

The Swedish Childhood Cancer Fund identifies and meets the challenges of ongoing and completed treatment in a relevant way, in the short and long term. At the same time, we document, analyse and spotlight these needs to raise the awareness and understanding of the general public and decision makers. This work will be intensified in 2020. We see that affected families and survivors fall through parts of society’s safety net; that needs to change.

With these measures, the Swedish Childhood Cancer Fund will provide the support and advice that a child with cancer, the child’s family and survivors need. We regularly assess this work and try to work with other parties when the opportunity arises and looks promising.

Sweden has six regional cancer associations that are active where the families are, both physically and emotionally. Shared structures and systematic quality work will make the associations’ activities even more equal across the country in 2020.

Information – Important to raising awareness about childhood cancer

Research shows that children with cancer and their families feel better when those around them know a bit about childhood cancer and understand the difficulties it causes. In most cases, the affected families find it easier to navigate in the health care system if they have an understanding of the disease and how it is treated. Information is an invaluable tool in our lobbying efforts to raise general awareness about childhood cancer and to spread knowledge about what it is actually like. The information mission also gives leverage to our activities in research and training and in advice and support.

The key to success in information activities is to work towards a goal, continuously ensuring that the communication activities we conduct generate a particular value, or contribute to achieving our goals in other parts of the operations. It is important that our information initiatives are adapted to the target group – our main focus is on the affected families, the general public, opinion shapers, decision-makers, healthcare staff and school staff.

Beyond the information drives that support our operations, and in addition to specific efforts to shape opinion on issues that are important to us, we know that greater knowledge makes people more willing to contribute. This is a necessity for us if we are to continue to invest in research into childhood cancer and to provide advice and support to the affected families.

The launch of the new communication concept: “Children and cancer don’t belong together” was well received by the families of children with cancer as well as by the general public. It will form the basis of the establishment of Childhood Cancer Month in September, when we will be providing information and raising awareness of childhood cancer and its consequences. Much of our communication is made visible at no cost.

It is also important that we as an organisation are associated with quality and reliability in addition to our core values of hope, courage and responsibility. The information mission is vital to this, as sharing our knowledge is a way for us to increase our credibility.

In recent years major changes have occurred in the digital landscape. Changes that we must embrace in our external communication as well as our own channels and our informational and training material. Our communication and material must be accessible, easy to process and easy to spread further to create awareness and involvement among even more people.

Fundraising – The right investments increase resources

The Swedish Childhood Cancer Fund and other fundraising organisations face daily challenges. From experience, we know that the right investments in our fundraising operations help us to make an even greater difference for children with cancer and their families. It is important to us that every cent we raise goes to the fight against childhood cancer.

It is a crucial balancing act. We need to invest the right amount of funds into fundraising to generate greater resources to fund research and important advice and support measures. Not too little, not too much.

Strategically, our focus should remain on the forms of partnerships and fundraising that generate the most benefit. It is vital to understand what new innovations we need to incorporate, what existing fundraising concepts are future-safe and therefore worthy of maintaining and developing, and what forms of donations we should phase out. Our future efforts are based on a focus on profitability. Our initiatives are to attract new target groups, offer new ways of donating, see to an increase in the average donation and reduce thresholds to donating.

Our donors, both now and in the future, are a far more diversified group than in the past. This demands greater flexibility and ability to meet the donors’ needs innovatively – in new arenas, with new payment solutions and new ways of donating. We will employ an even greater “from the outside in” perspective in the future.

It is also important that we conduct our fundraising correctly. The Swedish Childhood Cancer Fund’s long-term strategy aims to ensure efficient, reliable fundraising. Along with our focus on ethics and responsibility, it is important to create a broad base with a wide geographic spread that also allows us to disseminate information about childhood cancer and raise public awareness for our issues.

Information and fundraising go hand in hand. Another important part of our strategy is to prioritise fundraising activities correctly, especially targeting resource-strong groups with great potential to support the Swedish Childhood Cancer Fund. That is why we are focused on philanthropy and large donations from foundations as well as long-term corporate partnerships that benefit both parties.

In connection with raising money to support the fight against childhood cancer, it is important that we contribute to positive experiences. This is clearly demonstrated in our sports initiatives, the Hope events that combine the positive forces of physical activity with social commitment.