Opening Muscles Exercise Lab & additional consultation rooms

Top sport. That’s life for children with a muscle disease. Ordinary actions such as walking, brushing teeth and even breathing can be a huge struggle. Many of these children depend on daily care and support. Prompt diagnosis and appropriate treatment is also vital in this regard. And that’s what they get, including at the Spieren voor Spieren Kindercentrum in the UMC Utrecht. Ludo van der Pol, head of the Spieren voor Spieren Kindercentrum: “We are very happy with the new donation from Spieren voor Spieren. This has enabled us to realize important new facilities for our patients. They have to work hard to progress. Even staying stable requires a lot. With the renovated Exercise Lab, we offer not only an inspiring environment, but also the right technology to help children in their daily struggle. This makes the Spieren voor Spieren Exercise Lab unique in the Netherlands.”

An important link

Ludo explains: “The Spieren voor Spieren Kindercentrum has grown enormously in recent years. The center not only provides intensive (gene therapy) treatment for all of the approximately 150 children with spinal muscular atrophy (SMA) in the Netherlands, but also the treatment of many hundreds of children with other muscle diseases. With the additional consultation rooms and the renovated Exercise Lab, we can also provide for that growth.”

The Children’s Center is where the ambitious mission of the Spieren voor Spieren Foundation – to defeat all muscular diseases in children – becomes a reality. For example, here children are examined by the multidisciplinary team in one day. As a result, parents know immediately where they stand. Ludo: “During such a diagnosis day, parents and children get their own room for the necessary rest and privacy. This allows parents and children to fully focus on their journey.”

From research to action

The Spieren voor Spieren Exercise Lab focuses on highly complex care, scientific research and education. Bart Bartels, head of the Children’s Exercise Center and Muscles for Muscles Exercise Lab explains: “It is essential that children are diagnosed and treated quickly. The younger a person is at first symptoms, the more severe the disease usually progresses. By bringing all the specialists and facilities together, we can treat more quickly and effectively, examining the disease, the effect of medication and creating personalized exercise programs. We also do a lot of research on fatigue, exercise intolerance and outcome measures for trials. From the Muscles Exercise Lab, we also provide education through (inter)national practicals.”

Movement is the key to muscle strength

Physical therapy is an essential part of care for children with muscle disease. The revamped lab encourages children to stay active and get stronger. Special modifications, such as inspiring images of top athletes and interactive elements on the walls, ensure that children feel motivated to move and challenge themselves. Bart: “With the new equipment and furnishings, children are encouraged to move. Details of the facilities matter to our patients. This ultimately makes all the difference.”

For more than 26 years, Spieren voor Spieren has been committed to beating muscular diseases in children. They want to offer these children a future where they are no longer bound to their condition for life. The Spieren voor Spieren Kindercentrum in the UMC Utrecht plays an indispensable role in this.