How a Luxembourgish foundation supports families through childhood cancer

In 2023, there were six youth deaths due to cancer in Luxembourg. Childhood Cancer Awareness Month (CCAM) is internationally recognised and symbolised by a gold ribbon. During September, cancer charities, their supporters, and those personally affected by childhood cancer work to raise awareness and funds for pediatric oncology research.

In anticipation of Childhood Cancer Awareness Month in September, Family Matters spoke with Veerle Dierick, Fundraising and Volunteering Coordinator at Fondatioun Kriibskrank Kanner, who organises the annual Letz Go Gold race.

"Childhood cancer is still a rare disease and that is where our battle lies, in the sense of raising more awareness and trying to support research as much as we can," said Veerle.

3 missions of Foundatioun Kriibskrank Kanner

Fondatioun Kriibskrank Kanner, established 35 years ago, works directly with CHL KannerKlinik to support children, adolescents, and their families affected by childhood cancer.

Last year, the foundation assisted 30 new patients, aged 0 to 17, bringing the total number of families supported in 2023 to 314. Among these patients, 85% have a pediatric cancer diagnosis, and 15% have other rare diseases.

A multi-disciplinary team of therapists, psychologists, and educational specialists work with the sick child, their siblings, and parents at the hospital, family home, or the Foundation's premises in Strassen. The team offers sessions on psychosocial support, administrative and financial assistance, home help, pedagogical activities, school support, and entertainment for the child and their family. In 2023, the Foundation delivered over 1,400 sessions across these areas.

The Foundation operates three missions: to provide direct help to affected families, to inform the public about childhood cancer and undertake national awareness campaigns, and to facilitate volunteering opportunities and finance research projects.

“As part of our first mission, we work directly with the children’s hospital, who will contact us as soon as a diagnosis is made. A social assistant at the hospital, or a nurse, will inform us and if the parent is in agreement, we open a file here for them,” Veerle explained.

Veerle highlighted that childhood cancer treatments, including chemotherapy, radiation, and operations, will largely take place abroad. There is an oncologist for children at CHL, but this is a relatively new development. Children typically receive treatment from pediatric cancer experts at centers mainly in Brussels, Nancy, Paris, or Hamburg.

There are a total of 13 treatment centers across Europe, and the foundation arranges transport and accommodation as needed. Administrative support is provided for a range of processes, such as applying for special authorisation to seek treatment abroad, securing a parking space vignette for a child in a wheelchair, or requesting a wheelchair from the government.

The foundation also manages "La Maison Loch," a parents' house in Brussels where families can stay while their child is hospitalised. Multiple families can stay simultaneously, and two foundation staff members work there permanently. If families need to go elsewhere, the foundation ensures they rent a place for the family for the necessary duration.

This support extends to financial administration, with the foundation asking doctors, hospitals, and therapists to send bills directly to them. The foundation pays for anything not covered by social security to ensure there is no financial burden on the family. In 2023, the foundation covered 4,300 cases of illness-related bills.

Two educational specialists run activities and work with the sick child throughout the year, as well as with siblings during school holidays. At the premises in Strassen, a whole floor is dedicated to the children, and there is a large garden outside.

“If a child has had a prolonged time away from school, for example, they might need support with social integration. Activities can be in Strassen or elsewhere and are based on individual needs,” explained Veerle.

Veerle emphasised that they are not a crèche or a school; children usually come individually, or in smaller groups during school holidays.

“We organize trips during school holidays. Next weekend, for example, there is a trip to the north. Activities might also include artistic workshops, playing, or school support. For our adolescents, activities might be go-karting or hiking. One of our educational specialists is very sporty and tries to go outdoors as much as possible!”

“Our second mission is to raise awareness, and two important dates are 15th February, which is Childhood Cancer Day, and the entire month of September, which is Childhood Cancer Awareness Month when we host Letz Go Gold each year,” said Veerle.
 
The foundation has a team of 19 permanent staff and welcomes any number of volunteers. They generally offer three types of volunteering opportunities: information representatives at market stalls or sports events, administrative support at the office in Strassen, and direct work with the children.

“For every donation we receive, we send a thank you letter which all need printed and sent out. Volunteers here in Strassen can help with that, for example. If volunteering directly with children, we ask that people have a pedagogy background,” said Veerle.

The foundation organises two events each year that require a significant number of volunteers: the summer party in June, which this year had a Willy Wonka and the Chocolate Factory theme, and the upcoming Letz Go Gold, which will involve approximately 100 volunteers. If you or someone you know would like to get involved, you can contact Veerle directly at veerle.dierick@fondatioun.lu.

Operating as an ASBL (Association Sans But Lucratif, equivalent to a non-profit organization), the Foundation relies on donations from private individuals and corporations throughout the year to cover operational costs. The Foundation operates across three premises: an office in Strassen, 'La Maison Loch' in Brussels, and 'L'Appartement de Convalescence' on the Belgian coast, where families can stay free of charge anytime, during weekends or vacations.

“A lot of families don’t want to travel far when they have a sick child, so a little escape to the Belgian coast can be a good break,” said Veerle.

Letz Go Gold 2024

“Throughout the year, we fundraise for the foundation, but Letz Go Gold is specifically dedicated to raising funds for childhood cancer research; we simply organize and facilitate the run,” said Veerle.

This year marks the 7th edition of the race, where sponsors cover the costs, ensuring that 100% of the funds collected go directly into research projects aimed at finding new cures, improving existing treatments, and understanding the causes of pediatric cancers.

© Letz Go Gold

Last year, €617,094 was raised, and this year’s target is set at €800,000. Donations will remain open beyond race day until the end of October, and each year, the total funds raised have steadily increased since the inaugural race in 2018. This year’s progress can be tracked via live ticker.

A sign-up fee of €10 is required along with a pledge to raise €200 (€100 for minors and students under the age of 25) for participation in Letz Go Gold. The event takes place at the Letz Go Gold Village in Kockelscheuer, opening at 9am, featuring a large stage, food trucks, a bouncy castle, tents, face painting, music, and more. Participants have the option to run individually or as part of a team; large teams are allocated their own tent.

Participants can choose from three routes: 1.5km, ideal for strollers or wheelchair users, 5km, and 10km, all starting at 11am. Awards are given for the best fundraisers in each category. The day concludes with a closing concert and the announcement of the total funds raised.

For families with very young children, an on-site nursery is available managed by staff from Barbara and Tiramisu crèches. Pre-registration is required for the nursery; however, Veerle noted, “Despite limited nursery spaces for 40 children, it was not at capacity last year as so many children of all ages take part in the race."

Corporate support and participation

"Companies support the foundation consistently throughout the year, and for Letz Go Gold, we approach them specifically for sponsorship," said Veerle. "I've been very fortunate; this is our 7th edition, and I have many sponsors who return each year. I believe it speaks to the unique appeal of Letz Go Gold that once companies participate, they often return. Many of our sponsors also join in the run itself."

"I've noticed a trend where more companies supporting us financially also want to increase their involvement, such as through volunteering," Veerle continued. "We have numerous corporate volunteers at our events."

"It's another way to engage employees. Once they're involved on the day of the event, that's where awareness, participation, and genuine involvement really come together," Veerle emphasised.

Further support for families 

In 2022, a new service was launched in Luxembourg to support parents undergoing cancer treatment, aimed at easing their day-to-day responsibilities. This initiative is a collaborative effort involving three associations: the Cancer Foundation, Europa Donna (a support group for women with breast cancer), and Arcus.

The service, provided by professionals, is offered free of charge to residents of Luxembourg who are undergoing cancer treatment and are parents of children aged 0 to 13. Practical support includes maintaining the family home, cooking meals, accompanying children to school and extracurricular activities, assistance with travel, and supervision of homework.

Support is available for a maximum period of three consecutive months, with services rendered for up to eight hours per day, between 6am and 10pm, six days a week (excluding public holidays). This initiative aims to alleviate some of the burdens faced by parents undergoing cancer treatment, allowing them to focus on their health and well-being during this challenging time.