TYVA Energie supports Julien Vedani’s projects, living with multiple sclerosis with the project to ascent Kilimanjaro in order to raise awareness concerning this not enough known disorder and bring hope to ill people. We asked him to tell us more about his project and motivations, you will find his answers in the following interview.
The whole TYVA Energie’s team whishes you good luck for your ascent!
I am 33 and I was diagnosed with multiple sclerosis (MS) in 2015. My project is to be the first person with MS (plus it’s an aggressive one) to ascent Kilimanjaro with an exoskeleton next August: departure on August 13th!
It is an old dream that I put aside after I was diagnosed… A friend of mine told me in 2016 he was going to ascent it and I was so frustrated. But I did a one-month Europe trip in August 2019; another dream that I thought was unreachable and it gave me a lot of ideas! I was arriving in Lyon in September and my friends immediatly loved the idea, so the project was set up right after that!
Problems are infinite 😉 The preparation and sanitory crisis management is very complicated but we adapt to it. The management of MS is another thing, but it’s still complicated. My muscular and stability disabilities had to be handled, as well as my sleep, my mood and the weather which have an impact on my nervous system and performances… Concerning my stability disabilities, we found a great solution: a handrail held by two members of my team to which I grab on my left. It is really essential to me!
I heard about it in 2019 and it seemed essential in order to manage my muscular disabilities. After testing it by the end of 2019 at pôle Saint-Hélier in Rennes, I was convinced but there was still the batteries problem since they weren’t powerful enough to ensure energy for a full day on Kilimanjaro…
TYVA Energie chose to help Julien with this project by prodiving him the complete supply system of his exoskeleton. This system was design in accordance with Julien, in the most eco-friendly way possible to avoid the team to climb Kilimanjaro with a power generator and thus environmentally impact the ascent. To that end, TYVA Energie has provided to Julien 3 lithium batteries as well as 2 solar panels which will be carried by the members of his team and allowing to reload batteries during the ascent.
TYVA Energie was meeting all my expectations: a French company with an expertise on lithium batteries and the geniune will to work with local partners on renewable energies solutions in line with my values. Plus they are only at 1 hour-drive away from Lyon!
Julien VEDANI
My team is made up of my Project Manager Stéphane Loisel, my coach-nurse-Kilimanjaro expert Vanessa Moralès, two trailers apprentices friends Aurélien and Yahia, about 30 bearers, a cook and a guide. It represents a big team!
My partners are the French League against MS, and the pôle Saint-Hélier. My sponsors are Milliman (my company), the Actuaires et Associés office, TYVA Energie and the Officine Ortopedische Rizzoli who sold me the exoskeleton. Other sponsors are currently under discussion.
My first goal is to prove it is possible to bring courage and desire to people dealing with MS. I also want to sensitize concerning this not enough known disease touching approximately 125 000 people in France (25 to 35 years old average diagnosis!) – first disability source among young people after a traffic accident! Finally I want to promote new technologies designed to help ill people.
Trainings are going well. I exercise 1 h or 2 h a day and we are trying to climb a 500 m ascending elevation every weekends in team. I go to kinesitherapy 2 to 3 time a week.
We will take a very particular road for the ascent, the North road which is two times longer to ensure a better acclimatization: 10 / 12 ascent days. After each day I will test my constants with Vanessa and ensure a medical monitoring with the pôle St Hélier through satellite phone. I will do the descent with a Joëlette (offroad wheelchair) because my stability disabilities can be dangerous: 2 days planned.
After that, I want to build an association to keep sensitize general public about the disease and ill people about extreme sports and sport exploits, but also sensitize concerning the essential aspect of physical training and parasports. I have brand new ideas for future ascents, either way it’s just the beginning!
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