Your donation

The Swedish Childhood Cancer Fund works to prevent and combat childhood cancers. We also work to achieve better care and to improve quality of life for children with cancer and their families. We work actively to achieve our vision of eradicating childhood cancer. This is how we use your donation.

The majority of the funds we raise are used to finance research. This is a long-term and absolutely vital contribution to preventing, and eventually eradicating, childhood cancers. At the same time, we work actively to provide advice and support measures for children with cancer and their families, as well as to raise awareness and increase knowledge in the community about these diseases.

For this reason, we always carefully assess our initiatives to ensure the greatest benefit from the funds we raise.

Where your money goes

Three missions help to eradicate childhood cancer

To achieve our vision of eradicating childhood cancer, we need to provide more resources to research. It is also important that those suffering from childhood cancer – both the children and their families – get the advice and support they need and are entitled to. Our third mission, information, is crucial for the Swedish Childhood Cancer Fund to continue to fund research and provide vital advice and support. The information mission raises awareness and increases knowledge about childhood cancer and why your donation is important.

Research and training

The Swedish Childhood Cancer Fund is the single largest financier of research into childhood cancer in Sweden. We also support the development of new treatment methods and professional training in paediatric oncology. The Fund granted a total of SEK 274 million in 2018 to causes such as:

This year, 170 paediatric nurses and nurses’ aides, non-paediatric nurses and doctors were trained in paediatric oncology nursing.

SEK 137 million was granted in the autumn call for proposals. This is a significant increase over last year, allowing the funding of a record number of research projects.

To increase recruiting to paediatric oncology and to allow a greater number of clinical research projects, 13 registrar positions in the field of childhood cancer were funded at the end of the year.

Co-funding of the Haematological Oncological Clinical Trials Unit (HOPE) at the New Karolinska Hospital for early clinical pharmaceutical trials.

Funded 16 placements – an initiative for doctors and nurses in other institutions to do a placement in a paediatric oncology centre.

Distributed SEK 62 million to researcher positions in the field of childhood cancer.

Distributed SEK 10 million among five grants in the field of medical technology.

Advice and support

We plan, arrange, and further develop important advice and support measures to children with cancer and their families. This contributes to providing children and their families an opportunity for rehabilitation and much-needed recreation. Initiatives in the area, amounting to about SEK 43 million in 2018, went to, among other things:

The former Postcode Lottery funded project Maxa Livet has now become a permanent activity. Maxa Livet is a programme for adult survivors of childhood cancer aiming to improve their life situation and give them strength.

Held five get-togethers for grandparents of children with cancer, headed by Lennart Björklund, psychotherapist and qualified social worker.

Hosted 400 people over the course of the year at Almers Hus for a few days’ or a week’s relaxation and socialisation with others in a similar situation.

Ågrenska competence centre held seven stays for families of children with cancer, offering them knowledge about their child’s diagnosis as well as recreation and exchange of experiences with other families.

Continuous operations, such as consulting nurses, sibling support coordinators and youth camps and other residential activities.

Information

We work actively to produce and distribute important information and to influence public opinion regarding the issue of cancers in children and teens, which includes initiatives to raise awareness and increase knowledge. The information mission has used its 2018 budget of SEK 58 million for the following initiatives, among others:

The opinion drive “The Minister’s Promise”, a follow-up of last year’s drive, “If I were Minister for Health and Social Affairs”.

Arranged a seminar during Almedalen Week in which all governing parties agreed on special initiatives in paediatric cancer care.

Highlighted current research in childhood cancer as well as current and future challenges for researchers through the 2018 Childhood Cancer Report.

Arranged the highly appreciated telethon “The Childhood Cancer Gala – The Swedish Humour Prize”.

Provided information about childhood cancers and the Swedish Childhood Cancer Fund’s operations in our own channels, such as social media, our website and our publications, as well as in the press and media.

Launched Swedish versions of the Imaginary Friend Society films from the US Pediatric Brain Tumor Foundation.

Published the book Livet på paus (“Life on Hold”), a book for teenagers being treated for cancer. The book was supplemented with a YouTube series featuring three teenagers with cancer.

Research is the way forward

Every year, some 60 children in Sweden die of cancer. Many die of the disease itself or the treatment; other causes of death are relapses or a new cancer.
“It feels like we have a long way to go before we can cure them all, but we have hope in research,” says paediatric oncologist Mats Heyman.

Cancer is the most common cause of death in children aged 1 to 14 in Sweden.

The vision of the Swedish Childhood Cancer Fund is to eradicate childhood cancer.

“If we are to cure more, we need new methods. Naturally, we have set our hopes on research,” says Mats Heyman, paediatric oncologist and senior researcher at Karolinska Institutet.

The most common cancer diagnosis in children is acute lymphoblastic leukaemia, ALL, which strikes about 70 children per year. Heyman has helped to develop the new treatment protocol, ALLTogether, which is now being implemented to treat ALL in children. This is a project that the Swedish Childhood Cancer Fund helped to fund.

“When we consider changing treatment methods, it is important to look at causes of death. We need to understand whether we are losing patients due to the illness – meaning that we need to give more treatment – or if the children die of side effects, in which case we need to give less treatment,” Heyman explains.

The new treatment protocol reduces the proportion of children receiving high-risk treatment, with the aim of reducing treatment-related complications, and in the worst cases, mortality. The difficulty is getting the balance right.

“The big problem is providing enough treatment to cure the disease, but not so much that the patient risks dying of the treatment or suffering from severe side effects and late complications,” he says.

One method of tailoring treatment is to find genetic markers, variations in the genetic make-up that can show whether or not a specific patient is in a high-risk group. A major international study, which included Swedish researchers, found such prognostic markers for ALL.

“This analysis is one of several used to determine the risk group and treatment in the new ALLTogether treatment protocol,” Heyman says.

Magnificent year for Maxa Livet

Maxa Livet is a programme for adult survivors of childhood cancer. In the past year, the programme introduced several new activities, including a highly appreciated motivational course. “Activities like this help us childhood cancer survivors to find meaning in our lives again,” says Cecilia Grape, one of the participants.

Maxa Livet’s activities are about building self-esteem in order to find the tools the survivors need to live the lives they want to live.

“We are not focused on the cancer – we’re focused on the future,” says programme manager Charlotte Wallin.

The fifth annual Maxa Livet conference was held in 2018, in which a record number of participants got to meet other survivors and listen to lectures. The programme has also begun developing new types of activities based on the participants’ needs.

They included a motivational course with life coach and former basketball player Tommy Davidovic.

“I was intrigued by the description: ‘If you want to know who you are, what you want and how to get there’, so I signed on, even though I didn’t think I had many needs to fulfil. But during the course I found that I could go even further, and now I feel a lot more sure of myself when I take on a challenge,” says participant Cecelia Grape.

She is one of the early survivors – now 53 years old.

“It is so wonderful to get something back after all these years I’ve struggled alone,” she says. “Many of us survivors find ourselves trapped with nowhere to go and have lost our joy and zest for life. You don’t really know where you are going, or why you feel a great emptiness within. Activities like this can help us to find meaning in our lives again.”

The motivational course will continue in 2019. In addition, the programme plans a writing course and several health weekends focused on food, exercise, sexual health and relationships.

“We look a lot at health from a nonmedical perspective,” Wallin says, “because one of the great needs among participants is to identify what makes them feel good in life – not medicines and treatments.”

Life on Hold

Childhood cancer can strike in the early years all the way up through the teens. Developing a serious illness as a teenager, just as you are becoming an independent individual, is a special situation. That is why the Swedish Childhood Cancer Fund introduced the Livet på paus (Life on Hold) project in 2018.

Almost every day, a child somewhere in Sweden is diagnosed with cancer. Many of them are teenagers, who are in the midst of the process of breaking free from their parents and learning to take care of themselves.

Livet på paus is a long-awaited package of materials created by the Swedish Childhood Cancer Fund to provide advice and support to teenagers undergoing treatment or who have just been diagnosed with cancer.

The material consists of a book that is given directly to teenagers who receive a cancer diagnosis. In it, other teenagers talk about their own experiences of cancer. Videos were also made with more in-depth stories, which were spread on social media in order to reach a wider target group.

“The idea originally came from one of our consulting nurses, who had been in the UK and discovered materials for young people,” says Ylva Andersson, communications manager at the Swedish Childhood Cancer Fund. “Based on that, we created the Livet på paus material.”

One of the young people who participated is Frida. At age 13 she was diagnosed with Ewing sarcoma, a type of tumour that can develop in or outside the bones. She talks about how her life changed, and how it felt to become dependent on her parents again for simple things like taking a shower or using the toilet. It was also difficult watching her friends do everything she could not.

“It was hard when I thought about my friends out there living the everyday life I wanted to live,” Frida says in the book. “I wanted to get back to that life – that became my goal.”

The book Livet på paus was highly acclaimed and rewarded with the 2018 Publishing Prize.

“We have long needed material directed at young people with cancer,” Andersson says. “Teenagers are a target group that can be difficult to reach out to; it is important to use the right voice. Of the reactions we have had to the project, it looks like we got it just right.”