Over the next few months, Luc Vandevyvere will cycle around 100 kilometres a day to raise funds for research into his grandson's condition at the university in Brussels, VUB.
It was 2018 when, at just four months old, Vandevyvere's grandchild, Stan, was diagnosed with an incurable disease: Duchenne muscular dystrophy (DMD). "What went through my mind, and my wife's, was a feeling of utter devastation. My world suddenly stopped," Vandevyvere said in a statement released by VUB.
DMD is a disease caused by a gene mutation that weakens muscles over time. This tends to first affect muscles used for movement. When muscles involved in breathing and heart function are impacted, the condition becomes life-threatening. According to VUB, the average life expectancy of a DMD patient is 30 years.
Stan at the launch event of the Duchenne Fund in 2023. Credit: VUB
In 2020, Vandevyvere decided to take action. Under the name 'Cycling Against Duchenne', he took off on a cycling journey to support future treatments and cures for DMD.
Now in 2025, he is back on his bike to raise funds for VUB's Prof. Dr. Thierry Vandendriessche and Prof. Dr. Marinee Chuah, who are researching innovative treatments for Stan's condition. "Every donation, no matter how small, is desperately needed to continue research," he said. "I remain convinced that one day scientists will eradicate Duchenne from the world."
Vandevyvere aims to cycle 7,900 km in 79 days, a symbolic goal referring to the 79 exons that make up the gene responsible for building and maintaining muscles. Exons are parts of a gene that code for a protein.
The grandad hopes to conclude the journey, which started on 21 June, by World Duchenne Day on 7 September. While not an easy athletic feat, Vandevyvere's trick to overcome the challenge is remembering the children affected by the disease. "I only spend a few weeks a year on my bike for them, while they are confined to their wheelchairs day in, day out."
A bike sticker for encouragement. Credit: VUB
In addition to raising funds, Vandevyvere hopes the initiative sheds light on the life-changing disease "Cancer rightly receives a lot of attention, but there is still no cure for Duchenne. I want to change that," he said.
Ultimately, he would like the campaign to encourage others to take action and to share his message. "I also want to convey a message of hope, because hope is the last thing Duchenne can take away from us."
Those interested in supporting 'Cycling Against Duchenne' can donate to the cause online and follow Vandevyvere's journey on social media.
The cycling project is supported by the fundraising arm of the VUB, the VUB Foundation. It focuses on raising funds to support research projects, education and innovation at the VUB.
