A new challenge for the “Longue Route des Malades de la SLA” (ALS): The Mont Blanc Tour

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28/02/2018
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On August 22, a few days before the UTMB®'s grand departure, a unique and highly symbolic challenge will be launched from Chamonix Mont-Blanc. ALS patients and their escorts will take turns for 10 days to follow the UTMB® 2018 path.

ALS is an incurable neuro-degenerative disease that causes progressive paralysis of the motor muscles, which are necessary for independence and survival. Its causes are unknown, and it affects every year 1 new person out of 50,000 of all origins, on average around the age of 60 (although symptoms can appear at all ages). In comparison, Parkinson's disease affects 3 out of every 50,000 people each year. Between 3 and 5 years elapse from the diagnosis of the patient to his decease. Raising public awareness about ALS has been recently at the heart of the “Ice Bucket Challenge”.

A challenge to bring more awareness to the disease, for the 3rd year in a row

« La Longue Route des Malades de la SLA » is a charity obeying the law of 1901. Its purpose is to mediate this disease and raise funds for research. To reach these goals, the charity organizes each year a relay event for patients in wheelchairs (electric and joëlettes). In 2016, their circuit from the Savoie to Paris allowed to challenge the public authorities and to collect donations to the medical research on the disease (14 000 € donated, more than 2 500 signatures on petitions, nearly 5 million people sensitized through various media and social networks, commitment of the Ministry of Health to the training of doctors ...). In 2017 the circuit was the stage 18 of the Tour de France, and again allowed awareness and mobilization (14 000 € donations to research, more than 1 000 signatures of petitions ...).

The solidarity commission of UTMB® is supporting the patients of ALS

In 2018, the project of the charity is to follow the path of the UTMB® in 10 days with an expected arrival on the day of the departure of the race. The patients will run the trail in joëlettes (a type of sedan chairs) and electric wheelchairs, accompanied by volunteers as well as medical and sports team members.

 

The UTMB® was alerted by one of its 2 000 volunteers and found in this project the way to concretize once again the spirit of Solidarity which motivates its action over the years. Since its creation, the solidarity commission of the UTMB® is moved by this desire to help everyone to win their own victories: to overcome a difficult moment, to fight against the disease. It therefore naturally chose to get involved in this tour of Mont Blanc by ALS patients by taking part in the organization of the stages and sharing this adventure on its social networks. Moreover, every day, all members of the commission and organization will be keen to raise awareness for this disease affecting the freedom of movement which is so dear to our sport. This cooperation is an opportunity to remember that together we can overcome the obstacles and continue to move forward.

 

La Longue Route des Malades de la SLA 2018 is looking for French-speaking volunteers to help organize the circuit and support their patients.

 

More information: www.longueroutesla.org

Facebook : longueroutesla

Contact : lalongueroutesla@sfr.fr

 


Gilles Houbart
Chairman of La Longue Route des Malades de la SLA.

Former member of the 7th Alpine Chasseurs Battalion, former mountain guide and paragliding instructor. Lives with Charcot's disease for over 10 years.

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