For most athletes, a 500-kilometer journey is a test of endurance. For Anaëlle Robert, We see a manifesto. The 41-year-old photographer and athlete is embarking on a grueling roller skating trek from Auray to Bordeaux, covering a total of 496 kilometers to challenge the perceived limitations of a rare genetic condition.
Robert lives with Klippel-Feil syndrome, an orphan disease characterized by the abnormal fusion of two or more cervical vertebrae in the neck. In Robert’s case, the condition has manifested in profound physical challenges: her vertebrae are fused, she lives with deafness due to the absence of an inner ear, her left arm is not fully formed, and one of her legs is 2.5 centimeters shorter than the other.
Despite these anatomical hurdles, Robert is using this Klippel-Feil syndrome roller skating challenge to raise funds and awareness for three causes: the syndrome itself, the importance of sign language, and the fight against road violence. Her journey begins Wednesday, April 15, at 8:30 a.m. From Athéna, marking the start of a multi-stage odyssey across the French landscape.
The Anatomy of a Challenge
From a clinical perspective, Robert’s athletic achievements are extraordinary. Klippel-Feil syndrome often limits the range of motion in the neck and can affect the stability of the spine. The absence of an inner ear significantly impacts equilibrium and spatial orientation—the very senses required to maintain balance on eight wheels at high speeds.
Robert’s history suggests a lifelong refusal to adhere to medical expectations. Her mother, Elisabeth, recalls that early in Anaëlle’s life, the prognosis was bleak. “She didn’t have an inner ear; she wasn’t supposed to be able to walk and she should never have played sports,” her mother said. Instead, Robert pursued swimming, cycling, and running, eventually mastering black-diamond ski slopes before discovering roller skating.
Her entry into the sport began in 2014, shortly after she took her daughter, Elvinne, to a local skating club. Driven by a desire to prove her capabilities, Robert transitioned from a beginner to a competitive endurance skater, eventually tackling the 24 Hours of Quiberon and the 24 Hours of Le Mans.
Mapping the Journey to Bordeaux
The journey is divided into five strategic stages, requiring a blend of physical stamina and mental fortitude. Robert is not skating alone; she is supported by a team of elite skaters, including French national team member Caroline Jean, world champion Karine Urvoy, and veteran champion Claudie Duval.
| Stage | Destination Segment | Key Distance/Detail |
|---|---|---|
| 1 | Auray to Nantes | 152 km |
| 2 | Nantes to La Roche-sur-Yon | Part of 496 km total |
| 3 | La Roche-sur-Yon to La Rochelle | Part of 496 km total |
| 4 | La Rochelle to Royan | Part of 496 km total |
| 5 | Royan to Bordeaux | Final Destination |
This distance is a precursor to an even more ambitious goal: her fifth and final solo attempt at the 24 Hours of Le Mans. For that event, she has chosen a provocative engagement name: “Être handicapée, et alors ?” (Being disabled, so what?).
The Philosophy of Integration
While many athletes with disabilities locate community in parasports, Robert has a complicated relationship with the concept of “handisport.” For her, the distinction creates a barrier rather than a bridge. “I don’t like handisport; I desire to be taken like everyone else at the start of competitions,” she said. Her goal is to demonstrate that a disability does not preclude one from participating in mainstream athletics.
This drive for integration is backed by a formidable competitive record. In 2019, she placed seventh out of 67 participants in the French marathon championship. She also completed a 100-kilometer circuit in Bergerac in just 4 hours and 19 minutes, skating on a tight 200-meter ring.
However, the visibility of her success often masks the daily reality of her condition. Her husband, Jean-Marc Robert—a former rollerman who met Anaëlle through the competitive circuit in 2017—notes that her resilience is a necessity. “Anaëlle lives with pain, from morning to night and from night to morning,” he said.
Advocacy and Support
Beyond the personal triumph, the journey serves as a fundraising vehicle. Robert is collecting donations for Regart, an organization dedicated to the art of the deaf; the Association française du syndrome de Klippel-Feil; and the Ligue contre la violence routière.
Contributions are being managed through an online portal to ensure the funds reach these specific advocacy groups. Those wishing to support the effort can find the donation page at onparticipe.fr/c/VvQDkoKN.
Disclaimer: This article provides information about a rare medical condition for educational and journalistic purposes and is not a substitute for professional medical advice, diagnosis, or treatment.
As Robert moves toward Bordeaux, her progress will be monitored by her team and supporters, serving as a living demonstration of adaptive endurance. The final checkpoint of this journey will be her arrival in Bordeaux, which will then lead into her final preparations for the 24 Hours of Le Mans.
We invite readers to share their thoughts on adaptive athletics and awareness for rare diseases in the comments below.
