Annual report 2019

An emotional rollercoaster

A child laughs or smiles an average of 400 times a day. But when a child falls ill, it can be hard to find that laughter inside them – that’s why the Childhood Cancer Gala – the Swedish Humour Prize honours those who make us laugh the most, while the Swedish Childhood Cancer Fund raises awareness of the disease and its consequences.

The five-year anniversary of the Childhood Cancer Gala – the Swedish Humour Prize was a heart-warming, funny, emotional and engaging event. Viewers had the opportunity to become Child Supporters and contribute to the Swedish Childhood Cancer Fund’s work funding research projects and providing support to children with cancer and their families.

14-year-old Stina Börjesson was happy to have been a part of the gala and been able to share her story. Stina, who has received treatment for sarcoma, was on site with her parents and big sister at Berns in Stockholm.

“I hope that someone who is going through this right now will feel that they’re going to make it,” she says. “My first thought was, ‘cancer – that kills you,’ because my granddad died. But cancer is so much more.”

“I want to give a big, warm thanks to all the viewers who are sharing in the laughter and tears this evening,” says Thorbjörn Larsson, Secretary-General of the Swedish Childhood Cancer Fund. “Children and cancer don’t belong together. That’s why every single Child Supporter is incredibly important, and we’re really happy to see that so many people support the fight against childhood cancer.”

The Childhood Cancer Gala – the Swedish Humour Prize was produced by FLX in collaboration with the Swedish Childhood Cancer Fund and Discovery Networks Sweden. It aired live from Berns Salonger in Stockholm on Kanal 5 and Dplay on Monday 30 September 2019.

New potential pharmaceutical treatment for brain tumours in small children

A medicine used to treat a certain kind of epilepsy may be effective against medulloblastoma, an aggressive brain tumour in infants and small children.

Medulloblastoma is the most common type of malignant brain tumour in children and infants. The standard treatment is radiation, but this often leads to severe side effects on the child’s brain, so the treatment is not given to infants. Now researchers have turned their efforts towards more targeted therapy.

In a new study, researchers from Uppsala University, in collaboration with US and UK colleagues, found a new potential treatment for medulloblastoma in infants. It turns out that a medicine used to treat a certain kind of epilepsy may be a new way to treat the malignant brain tumour. It involves a certain protein, mTOR, which affects the growth of cancer cells. The medicine includes a special mTOR inhibitor that can cross the blood-brain barrier and attack the tumour inside the brain.

“This is a very promising finding,” says Fredrik Swartling, who headed the research study that was funded in part by the Swedish Childhood Cancer Fund. “If this can be used on children with medulloblastoma who do not respond to the standard treatment, it would be fantastic.”

The funding from the Swedish Childhood Cancer Fund has been absolutely crucial to the study.

“Indirectly, it contributed by allowing us to enhance our understanding of the development of medulloblastoma and to find a new treatment that we hope will work clinically and lead to fewer side effects than the alternatives we have today,” he concludes.

On two wheels to Paris for children with cancer

Team Rynkeby − God Morgon is one of the largest independent donors to the Swedish Childhood Cancer Fund. In 2019 they donated SEK 41.1 million to the fight against childhood cancer.

One week last summer, 2,100 cyclists and 550 assisting staff from eight countries, divided into 57 teams, of which 16 were from Sweden, pedalled all the way to Paris. The SEK 41 million that the participants raised during the course of the year comes from participant fees, corporate sponsors and a number of local fundraisers.

“I’m always just as stunned,” says Paul Chronqvist Svensson, country manager at Team Rynkeby Fonden in Sweden. “We beat our record year after year, and by large amounts.”

Paul says that the local connection is important and contributes to the companies’ involvement. And of course, the sense of camaraderie and commitment in the participants is vital.

“It’s inspiring to do a good thing while doing something good for yourself,” says one participant who has cycled to Paris several times.

This year’s donation will be used in part for research in immunotherapy and cell therapy, treatments which are milder on the body than chemotherapy. Another part of the donation will go to research on late complications. “The number of children who survive their cancer is increasing, but what many are unaware of is that 70% of survivors have to live with difficult complications of their disease and its treatment – for their whole lives,” Paul explains. “We want to help these children to live – not just survive.”

“The conversational support really helped me”

Each year about 100 children in Sweden are diagnosed with a brain tumour. More and more of them are surviving these days, which means that the group of children who have been treated for brain tumours is growing. Now they are being offered a new kind of conversational support.

A new activity in 2019 is that the Swedish Childhood Cancer Fund offers digital conversational support to families with children who have been diagnosed with brain tumours and have completed their therapy, or where the child is dealing with a relapse. The conversational support is a complement to standard care – simpler and more readily accessible because the conversations are online or by phone.

Ann Martinsson’s daughter Novali was treated for a brain tumour in 2017.

“When you get out of the hospital, you are suddenly all alone and dealing with a new life situation,” Ann says. “New questions keep cropping up and it is hard for others around you to understand the problem.”

The person who provided support to Ann is Lena Falck, certified psychotherapist and specialist in brain tumours, with extensive experience of contact with families. Ann says that this targeted competence makes a difference. She got the help she needed, as well as tools for how to deal with various situations.

Conversational support is offered to parents, to the child with cancer and to siblings. One advantage is that everyone has access, no matter where they live, which is important because many do not have local support. It is also easy to talk to different groupings of family members.

“I have one family where I’ve talked to all four of them on different occasions, and another where I talked to both parents simultaneously at different locations,” Lena says. “The location-independence and planning flexibility make it easier for me to help the whole family.”

They wanted to share with people in need

Axel Gustafsson’s interest in the stock market, as well as his simple, frugal life with his wife Aina, resulted in a fortune that he willed to charity, including the Swedish Childhood Cancer Fund.

Siblings Anette and Lars Bohlin speak warmly of their uncle Axel and his wife Aina.

The couple never had children of their own, so their niece and nephew stepped in at the end when shopping and keeping house became too much for them. Axel and Aina’s lifestyle gave no clue as to the amount of money they had.

“They didn’t treat themselves to anything,” says Lars. “For example, they only had one car their whole lives, a Volvo Amazon. They drove it until they were too old to drive anymore.”

Most of the money the couple left behind came from Axel’s great interest in the stock market. He began investing back in the 1940s and was active until his death just before his 99th birthday.

No one would have guessed that the couple possessed great wealth, but the family knew about it.

“Everyone knew that they planned to donate their wealth to charity,” Anette says. “We’ve known that since we were children. They wanted to share with people in need.”

Eight organisations shared the bequest. The Swedish Childhood Cancer Fund and a local association called Central Sweden each received SEK 1.8 million.

Anette and Lars tell us that Aina and Axel both loved children. So it seemed quite obvious that they would choose to donate to the Swedish Childhood Cancer Fund.

“Cancer is a terrible disease, and I think they were particularly upset when it strikes children,” Lars says.

Aina and Axel both died in 2018, just a few months apart. Aina was 99 and Axel was 98.

The entire genetic code to be analysed

Soon more children with cancer may receive a better diagnosis and treatment. The Swedish Childhood Cancer Fund has a major initiative to ensure that all children diagnosed with cancer go through full genetic sequencing. So far, SEK 15 million has been donated to Genomic Medicine Sweden’s ambitious project.

Intense preparations are underway in the nation’s paediatric oncology centres to ensure that children with cancer are offered full genetic sequencing – a complete cataloguing of their entire genetic make-up.

The initiative aims to boost our understanding of why childhood cancer occurs and to improve our ability to make a faster, more detailed diagnosis. The goal is to develop the world’s most modern diagnostics for childhood cancer.

Full genetic sequencing will also make it easier for individual children to gain access to targeted treatment and to participate in relevant clinical trials.

Currently the organisation is working feverishly to get the logistics, long-term funding and ethical permits in place. They hope to begin genetic testing in 2020.

“It’s touching to see the enthusiasm we’ve encountered from all parts of Sweden,” says project coordinator David Gisselsson Nord, pathologist in Region Skåne and paediatric oncology researcher at Lund University. “We really want this to work and to give the children access to the new diagnostic tools.”

The pilot project is a joint effort between the Swedish Childhood Cancer Fund. the National Paediatric Tumour Biobank and Genomic Medicine Sweden.

Lithium heals radiation damage in the brain

The traditional psychiatric medicine lithium may contribute to healing damage from radiation treatment on the brain, at least in trials with mice. This is true even years after the injuries were incurred.

It is common that children who have received radiation for brain tumours develop cognitive difficulties later in life, depending on what kind of injuries occur in the brain. But now researchers at Karolinska Institutet have shown that the memory capacity and learning ability of mice is improved if lithium treatment is provided after radiation therapy in the brain. Mice that were treated with radiation early in life and later received lithium, long after the completion of treatment, perform just as well as mice that did not receive radiation.

“The results were better than we had dared to hope,” says Klas Blomgren, chief physician and professor in paediatric medicine at the Department of Women’s and Children’s Health at the Karolinska Institutet in Solna.

The researchers found increased new generation of nerve cells in an area that is important for the memory (hippocampus) during the period when the mice were given lithium. But not until the treatment was discontinued did the cells develop into mature nerve cells. This probably means that the treatment needs to be provided in periods, for example one month with lithium, then one month without.

The research team is now preparing for two randomised, placebo-controlled clinical trials.

For several years, the Swedish Childhood Cancer Fund has awarded grants to Klas Blomgren and research into lithium and radiation damage in the brain.

“The support from the Swedish Childhood Cancer Fund has been crucial to this research; without it, these studies would never have happened,” Blomgren says.

Focus on survivors of childhood cancer

The 2019 Childhood Cancer Report shined a spotlight on shortcomings in the follow-up of survivors of childhood cancer; many do not receive the support they need. In some cases, the lack of follow-up and contact with the healthcare system leads to severe medical conditions being overlooked.

Since 2016, there is a national care programme for following up paediatric cancer. Several of the regions are now following the programme and have established follow-up wards, but this has not been fully implemented throughout Sweden. Those who were treated in Linköping and who belong to the south-eastern healthcare region do not have such a ward.

The vision of the Swedish Childhood Cancer Fund is to eradicate childhood cancer, but there is also a clear objective for survivors of childhood cancer. Those who have had cancer in childhood should not simply survive – they must be able to live. This makes it important to invite in all survivors of childhood cancer for follow-ups so that those at risk of complications can be found and receive the right care in time.

Survivors of childhood cancer, about 11,000 of them today, are a forgotten group in society. There is a great lack of knowledge among the general public and among decision-makers about the lasting difficulties those who have had childhood cancer must live with. Society and decision-makers must take greater responsibility for this group.

After the launch of our 2019 Childhood Cancer Report, politicians in Region Jönköpings Län – a part of the south-eastern healthcare region – came to an insight. The 2020 budget proposal that the governing coalition agreed on includes a follow-up ward for survivors of childhood cancer. The ward is under development by a project team with representatives from three different regions (Jönköping, Kalmar and Östergötland) and will open in 2021.

The invisible siblings

The Swedish Childhood Cancer Fund’s sibling supporters try to add a bit of normality to a situation that is anything but normal. Whether they are answering questions or simply being someone that you can laugh with.

When a child is diagnosed with cancer, their siblings are often worried. The family is in crisis and the parents have their hands full with the severely ill child. A lot of feelings and thoughts come bubbling up that the siblings are not used to. Like worry and anger at the same time, and perhaps, above all, an intense longing for everything to go back to normal.

While the parents of children with cancer can take time off work, their siblings need to keep performing as usual – for example, earning the marks they need to get into upper-secondary school.

Today all six paediatric cancer centres, as well as the Lilla Erstagården children’s hospice, have sibling supporters to support the siblings of children diagnosed with cancer.

The sibling supporters lend their support both at the hospital and outside of it and are available for children of all ages. One important part of this support is listening to and talking with the siblings and making sure that they get the information they want and need.

Being able to share difficult emotions with someone else who truly understands what you are going through and how you feel when you have a brother or sister who is severely ill, is invaluable. That’s why the sibling supporters always arrange get-togethers of young people in the same situation, many of whom continue to stay in touch for a long time afterwards.

Involvement creates pleasure in the workplace

The staff at Bauhaus don’t just sell DIY products. They also contribute to the fight against childhood cancer by recruiting premium customers, selling Christmas trees – or even by going to the gym.

Bauhaus has worked with the Swedish Childhood Cancer Fund since 2011 and has raised millions of kronor. In 2019 the figure was SEK 5.2 million. Several times a year they hold drives, and every time a customer swipes their membership card at the till, the company donates one krona.

“I feel happier at work when I feel I’m contributing a little something extra,” says store clerk Simon Emretzon about the partnership.

Over the years Bauhaus has carried out many other campaigns in partnership with the Swedish Childhood Cancer Fund, both national and local projects in selected stores. In Gothenburg, one store teamed up with Chalmers University of Technology. Each year architectural students from the university build a summerhouse, which is auctioned off to the highest bidder.

The staff at Bauhaus can also raise money through the recurring Run for Life promotion. The company donates SEK 10 every time one of the employees trains for the race, achieving two purposes at once: employee fitness and a contribution to childhood cancer research.

“The great thing about having Bauhaus as a key partner is that we really work together,” says David Balsam, key partner manager at the Swedish Childhood Cancer Fund. “All of Bauhaus participates, from the staff in the stores to the top management. It is extremely valuable for the Swedish Childhood Cancer Fund and the fight against childhood cancer to have a partner like Bauhaus.”

The importance of togetherness

Hiking, climbing, painting, yoga or playing football, floor ball or music. There are many activities at the camps for children and young people with cancer and their siblings.

It is important for children with cancer and for their siblings to meet others in the same situation. To be part of a context where others understand without your needing to explain it. To be able to complain and be understood. Or to just be, to laugh and have fun – together.

Every year, the Swedish Childhood Cancer Fund arranges a highly popular youth camp attended by some 150 teens aged 13–19. To give even more young people the opportunity to go to camp, the Swedish Childhood Cancer Fund also collaborates with other players that organize camps. One of those is Stadium Sportscamp, Day Camp.

At Day Camp, which is from 8 AM to 4 PM each day, participants can try out different sports and meet other participants who share their experiences.

Oliver, age 10, was treated for cancer from age 3 to 6. He was one of the 15 participants at Day Camp for three days in July 2019. Oliver says it was the most fun he’s had in his entire life. His mother Martina adds,

“Getting to play with children his own age, with similar experiences, was so good for Oliver. It did him so much good to be able to vent about everything he’s been through with others like him in a fun, easygoing environment. It’s so great!”

Milestone – SEK 3 billion to research

In connection with the funding offers in autumn 2019, the Swedish Childhood Cancer Fund achieved a new milestone – the organisation has now allocated SEK 3 billion to research since the early 1980s.

The Swedish Childhood Cancer Fund distributes funds to research projects in paediatric cancer three times a year. Last autumn’s big call from proposals resulted in SEK 130 million to 76 different research projects.

“I’m incredibly happy about this,” says Thorbjörn Larsson, Secretary-General of the Swedish Childhood Cancer Fund. “Thanks to research, the treatment of childhood cancer has made enormous progress, and today an average of 85% of Swedish children who develop cancer, survive. But that’s not enough – we want to do even more to power development and meet the challenges that bring us closer to the day when no child has to die of cancer. Thanks to all of our incredible donors, we can continue to give researchers the long-term support they need so that more children can be saved.”

The Swedish Childhood Cancer Fund’s website presents more of the research projects that received funding.

Siffror i korthet

The Swedish Childhood Cancer Fund has granted SEK 3 billion to research since its start in 1982. This makes the Swedish Childhood Cancer Fund the single largest financier of research into childhood cancer in Sweden.
3 times a year, the Swedish Childhood Cancer Fund distributes funding to research. The applications are assessed by the Swedish Childhood Cancer Fund’s research committees.
224 ongoing research projects are currently being funded by the Swedish Childhood Cancer Fund.

2019 review
including impact and sustainability reports

85%

124

4,3%

An emotional rollercoaster

New potential pharmaceutical treatment for brain tumours in small children

On two wheels to Paris for children with cancer

“The conversational support really helped me”

They wanted to share with people in need

The entire genetic code to be analysed

Lithium heals radiation damage in the brain

Focus on survivors of childhood cancer

The invisible siblings

Involvement creates pleasure in the workplace

The importance of togetherness

Milestone – SEK 3 billion to research

459

302

45

Children and cancer don’t belong together

2019 reviewincluding impact and sustainability reports

85%

124

4,3%

An emotional rollercoaster

New potential pharmaceutical treatment for brain tumours in small children

On two wheels to Paris for children with cancer

“The conversational support really helped me”

They wanted to share with people in need

The entire genetic code to be analysed

Lithium heals radiation damage in the brain

Focus on survivors of childhood cancer

The invisible siblings

Involvement creates pleasure in the workplace

The importance of togetherness

Milestone – SEK 3 billion to research

459

302

45

Children and cancer don’t belong together

2019 review
including impact and sustainability reports