Running for Juliette

From Mountain Trail to Research Support

On Sunday, July 26, the father of Juliette, a child living with Jeavons syndrome, took on an extraordinary challenge: the Millet XTrail Courchevel in the French Alps.

This demanding mountain trail race is known for its tough conditions, requiring participants to cover a long-distance route over steep and technical terrain, with an elevation gain of more than 4,100 meters. For Juliette's father, however, this was about much more than sport. He decided to use this personal challenge to raise awareness and support research into epilepsy, with a particular focus on rare childhood epilepsies such as Jeavons syndrome.

Family members and friends supported the initiative by sponsoring every kilometre he completed during the race. Taking on one of the most challenging mountain trails in the French Alps, he successfully covered an impressive 55 of the 66 kilometres. Near the end of the race, exhausted and with only about ten minutes separating him from the finish line, he received the most meaningful support of all: Juliette joined him for the final stretch, running the last meters together with her father towards the finish. It was a powerful and fitting end to a remarkable challenge that was entirely dedicated to raising awareness and support for research into rare childhood epilepsies.

Thanks to the remarkable generosity and encouragement of everyone involved, a total of €3,000 was raised.
These funds will directly support ongoing research into rare childhood epilepsies, helping researchers gain a better understanding of these conditions and work towards improved care and future treatment options for affected children and their families.

Every Contribution Matters

With a total of €3,000 raised, this initiative made a valuable contribution to research into rare childhood epilepsies. Through this challenge, Juliette and her parents wanted to make a concrete contribution to building a better future for children with epilepsy while also highlighting the importance of scientific research.

Their story is a wonderful example of how families, friends and communities can come together to support epilepsy research. Progress in rare disease research depends on many people making a difference, whether through fundraising activities, donations, awareness campaigns or simply sharing their story.

A Heartfelt Thank You

We would like to sincerely thank Juliette's family and everyone who supported this initiative. Their commitment demonstrates how personal determination and community spirit can help advance research and create hope for children and families affected by epilepsy.

Would You Like to Support Research?

Initiatives like this are always needed. Research into rare childhood epilepsies relies heavily on the support of patients, families, donors and the wider community.

If you would like to make a contribution, organize a fundraising activity or learn more about how you can support our work, please visit: