Affected by Usher syndrome type 2, Alicia Bodevin from Malmedy is going to climb Kilimanjaro: “My desire is to talk about this rare disease”

It is thanks to the Kili Usher association, created by Soline Bonnomet, who also has Usher syndrome, that Alicia will be able to carry out this project. The aim of this association is to organise travel challenges every two years in order to raise funds for medical research. There will be 12 people with Usher syndrome or visual impairment climbing Kilimanjaro, which peaks at 5,895 metres, a hike of more than 40 km, or 6 to 8 days of climbing, at a rate of 5 to 6 hours of walking per day. A documentary will be made on site.

Alicia’s initiative has already generated a great wave of solidarity. Many people have already contributed to her campaign with donations and messages of encouragement are pouring in on social networks. “It’s amazing to see so much support. It gives me even more motivation to reach the top.”

The departure for Kilimanjaro is scheduled for July 2025 and the project represents a budget of approximately €6,500 per person. To contribute to the fundraising campaign and support research into Usher syndrome, you can make a donation via the website of the association “Kili Usher” at kiliusher.com (via bank transfer by putting “Alicia” in communication).

After the climb, a check will be presented by the association to the Vision Institute in Paris, which is conducting studies on potential treatments to improve the quality of life of people suffering from this disease.