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Annual report and review 2016

Your donation

We will prevent and combat childhood cancers. We are also working to achieve better care and to improve quality of life for children with cancer and their families. Our vision is to eradicate childhood cancer. To reach our goals, the Swedish Childhood Cancer Foundation carefully balances its initiatives.

The majority of the funds we raise are used to finance research into childhood cancer diseases. At the same time, we need to actively work with advice and support initiatives for patients and their families, while also increasing knowledge about and awareness of childhood cancer.

Your donation contributes to several missions that are invaluable in the fight against childhood cancer. We are constantly working to ensure that our commitments are appropriate and that the initiatives are correctly balanced, in order to derive the greatest benefit from the funds we raise.

Where your money goes

62 per cent is placed in research and training efforts, 11 per cent contributes to fundraising work, 14 per cent to information, 10 per cent to our advice and support program, whilst 3 per cent is allocated to administration.
62 per cent is placed in research and training efforts, 11 per cent contributes to fundraising work, 14 per cent to information, 10 per cent to our advice and support program, whilst 3 per cent is allocated to administration.

Research and training

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Development of unique paediatric tumour bank that stores sensitive cellular tissues
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Sweden’s first research initiative into brain stem glioma, a tumour that to date has been incurable

Fundraising work

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The Swedish Childhood Cancer Foundation’s Hope events get people involved and promote fundraising through physical activity
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The 2016 Childhood Cancer Gala honours affected little heroes while helping to recruit thousands of new Child Supporters

Information

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Focus on opinion formation raises awareness of and concern for the Swedish Childhood Cancer Foundation’s issues
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The 2016 Childhood Cancer Report summarises the status of ongoing research and helps to raise awareness of childhood cancer

Advice and support

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Increased investments in specialist nurses and sibling support coordinators at paediatric oncology centres

*Please note that the Swedish Fundraising Control's calculations of the Swedish Childhood Cancer Foundation’s income reached a slightly higher amount than shown above. The reason is that the calculation model includes interest income and similar income items from the Swedish Childhood Cancer Foundation’s long-term security holdings.


Three missions help to eradicate childhood cancer

The vision of the Swedish Childhood Cancer Foundation is to eradicate childhood cancer; more research is needed for us to reach our goal. Alongside the key research mission, the Swedish Childhood Cancer Foundation also aids families of children with cancer through its advice and support mission. In order for the Swedish Childhood Cancer Foundation to continue to finance research and support families of children with cancer, our third mission, information, is crucial. It raises awareness of and concern for our issues.



Research and training

The Swedish Childhood Cancer Foundation is the single largest financier of childhood cancer research in Sweden, and also provides financial support for development of new treatment methods and continuing education in the field of childhood cancer.

This year’s investments, amounting to SEK 238 million, were allocated for purposes such as:

  • Sweden’s first research initiative focused on brain stem glioma – specifically, the highly aggressive brain tumour, pontine glioma. This is one kind of childhood cancer for which there is no cure. The first Swedish child is now included in a pan-European research project that hopefully will save lives. Read more about pontine glioma research at Barncancerfonden.se.
  • Development of the National Paediatric Tumour Biobank at Karolinska University Hospital, a unique project that collects tissues from solid tumours with the goal of linking the tissue material with clinical patient information through the Childhood Cancer Registry. This process will make it possible to conduct research that includes information about both treatment and tumour. Read more about the National Paediatric Tumour Biobank at Barncancerfonden.se .
  • Funding of 4,263 hours of continuing education in childhood cancer for nurses, as well as 1,792 hours for training of 64 doctors specializing in paediatric oncology.
The Swedish Childhood Cancer Foundation allocates research grants according to the following chart. Most funding goes to leukaemia research, with a total of 29 per cent in 2016. Closely followed by research efforts into CNS tumours and Sympathetic nervous system.

Advice and support

The Swedish Childhood Cancer Foundation provides advice and support activities to assist families of children with cancer in various ways. For example, we offer families opportunities for recreation and rehabilitation, and work to ensure that families get the support they need and to which they are entitled.

This year’s investments, amounting to SEK 37 million, were allocated for purposes such as:

  • Stronger focus on specialist nurses. Every paediatric oncology centre has nurses who specialize in fields such as brain tumour diseases or other types of childhood cancer. Read more about specialist nurses here.
  • 6.5 sibling support coordinator positions. Sibling support coordinators can be found at every paediatric oncology centre and at Lilla Erstagården (paediatric hospice). Read about sibling support coordinators here.
  • Camps and stays. The majority of stays during the year were held at Ågrenska competence centre and 200 youngsters participated in the giant youth camp, “Camp Happy”. In addition, 35 youngsters had the opportunity to travel to Barretstown, Ireland, where camps are arranged for children and young people who are currently or were previously under treatment for cancer, as well as for their siblings. Read more about camps and stays here.


Information

The Swedish Childhood Cancer Foundation was founded over 35 years ago with the goals of spreading information about cancers in children and teens and shaping public opinion. This is still a primary focus, which also includes initiatives to boost knowledge and awareness.

This year’s investments, amounting to SEK 52 million, were allocated for purposes such as:

  • Focus on opinion formation in both owned and earned media, which helps to raise awareness of and concern for our issues. With nearly 5,000 articles and media postings during the year, awareness of childhood cancer diseases is higher than ever.
  • The Swedish Childhood Cancer Foundation publishes a series of editorial publications annually such as the Barn&Cancer magazine, the Maxa Livet (Get the most out of life) magazine for young childhood cancer survivors and the comprehensive Childhood Cancer Report. In addition, the Swedish Childhood Cancer Foundation provides a variety of information activities that help raise awareness about children who suffer from cancer.
  • Film production in connection with events such as the Childhood Cancer Gala and the Swedish Humour Prize, which help to enhance our fundraising activities and boost knowledge and awareness of childhood cancer.

We ensure that your donation is used where it is needed most

The Swedish Childhood Cancer Foundation has been assigned a ‘90 account’ by the Swedish Fundraising Control. One of the main requirements to obtain such an account is that not less than 75 per cent of the organisation’s total income must be spent on mission-related initiatives. In addition, administration and fundraising expenses may not exceed 25 per cent. In 2016 the Swedish Childhood Cancer Foundation allocated 86 per cent of funds to mission-related initiatives and 14 per cent went to administrative expenses and bolstered fundraising activities.

The Swedish Childhood Cancer Foundation also belongs to the Swedish Fundraising Council (FRII) and is therefore required to publish an annual quality code report. Apart from matters encompassed by the FRII quality code, we work with additional documents to regulate the operations and ensure that your donation is used where it is needed most. These include a staff manual, special job descriptions, authorisation procedures and a number of mission-critical policies and guidelines.


Quality-assured research process

A systematic, meticulous approach subject to external review is crucial to ensure an independent and qualitative research funding process. The Swedish Childhood Cancer Foundation constantly reviews its procedures and guidelines to actively avoid conflicts of interest and to ensure that we fund the right research projects.

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1. Call for applications

The Swedish Childhood Cancer Foundation secretariat presents recommendations regarding research opportunities to be announced during the year. The Board decides and application deadlines are set.

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2. Applications are received and preliminarily reviewed

Applications are initially reviewed to ensure that they meet all requirements and to determine whether any conflict of interest is involved before they are distributed to the responsible research committee. The proper expertise must be represented in the committee and a decision taken on whether to involve an external reviewer.

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3. Research committee review

The responsible research committee assesses the applications based on scientific quality, research team expertise and relevance to childhood cancer. Additional opinions may be requested from external specialists and representatives from the Swedish Childhood Cancer Foundation’s layman group.

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4. Decision on allocation

The chairperson of the research committee (not a member of individual research committees) takes the final decision, in consultation with Secretary-General of the Swedish Childhood Cancer Foundation, on allocation of grants based on recommendations from the research committee.

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5. Payment

Approved grants are reported as liabilities and contracts with research funding recipients are signed. Payments are made throughout the entire research project period, usually 1–3 years.

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Long-term research projects

Several of the research projects funded by the Swedish Childhood Cancer Foundation are conducted over several years. Completed research projects also often provide the basis for extended and in-depth research. It is therefore not uncommon for research groups working with childhood cancer diseases to participate in new calls for applications when funded research projects are completed.

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Continual follow-up

Funded research projects are continually monitored and evaluated. Research grant recipients are required to submit an annual report presenting full evidence supporting compliance with the research plan. A complete final report demonstrating fulfillment of previously established research goals must be submitted at the end of the research project.

Management of our assets

Research projects funded by the Swedish Childhood Cancer Foundation generally take several years to complete. In practice, this means that when a research project is approved, the Swedish Childhood Cancer Foundation undertakes to pay out funds for several years. In order to ensure that the Swedish Childhood Cancer Foundation can live up to these commitments, even in times of reduced donations, some of the assets are managed in various types of financial instruments. To support the Swedish Childhood Cancer Foundation’s asset management the Board has a Finance Committee consisting of individuals outside the Foundation’s own organisation who possess strong knowledge of the capital markets. The Finance Committee is tasked with tracking the return on capital and ensuring that asset management complies with the Swedish Childhood Cancer Foundation’s investment policies. More information about asset management and the Finance Committee can be found in the Administration report.

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The Swedish Childhood Cancer Foundation is reviewed by the Swedish Fundraising Control, which makes sure that organisations with approved donations accounts spend at least 75% of their revenues on mission-related initiatives.

Donor Service: 020-90 20 90
Secretariat: 08-584 209 00
Visiting address: Hälsingegatan 49, Stockholm
E-mail: info@barncancerfonden.se
Corporate registration number: 802010-6566
Plusgiro: 90 20 90-0
Swish: 90 20 900
Questions & answers – visit our support forum

FRII-logoThe Swedish Childhood Cancer Foundation complies with the Swedish Fundraising Council’s (FRII) quality code for fundraising organisations. The purpose of the code is to increase transparency and openness in the sector, thereby strengthening confidence in organisations that comply with the code.