Muscular distrophy gives them wings

When two brothers attempt to fly over the Sahara with a mircolight aircraft

Alexandre and Nicolas are nailed to the ground by their muscular distrophy. Soon they will be irrevocably attached to a wheel-chair. To escape this tough evidence and to stuff themselves with hope they are attempting a final challenge: to fly over the Sahara desert piloting a microlight aircraft. Join them to help them achieve this uncommon adventure; the disease does not wait! There is urgency...

What’s biting them, would you ask?

The basic idea stems from a simple observation : to achieve an amazing deed with the goal to generate a large mediatic impact. The backbone of this bold challenge is to be found in the fact that genetic diseases are still not very well known. To actively promote a communication action about these neuro-muscular diseases we have to act all together! Through this venture you will help many people learning about genetic rare diseases. They concern 3 millions french people and not less than 25 to 30 millions in Europe. Through an increased awareness we will help the genetic research to develop adequate therapies. Alexandre and Nicolas were born to early to benefit yet unkonwn therapies and this is why they are eager to promote public awareness of these diseases. While dragging their burden they hope it will improve the life quality of men to come. Help us convey this hope message!

Muscular-distrophy

There aremany such diseases, every one being associated to a specific gene. The most frequent is called “Duchenne distrophy” when the distrophyn gene (a muscular protein) either completely fails or is defective. New born children have normal muscles but their muscular cells will gradually die out because of this failing protein. During childhood the impact will be limited as there are still enough muscular cells to compensate this deficiency, but soon the quick death rate of muscular cells will impact the autonomy of the child. With 4 to 5 years of age he would be awkward during sports, soon he would have difficulties to go up stairs. With 10 he would not walk easily and fall often and soon would need a wheel-chair. Life would become more and more difficult. “Duchenne distrophy” sick persons have a life expectancy ranging from 20 to 30 years. They usually die from heart weakness, the heart, as a muscle, being finally also affected by the disease. Alexandre and Nicolas disease is called “Limb Girdle Muscular Distrophy”. It is closed to the “Duchenne Distrophy” but it concerns mainly the scapular and pelvic girdle muscles. Its progress is also slower.

Alexandre and the Sahara

“All began in 2002. Just like bitten by a malaria infected mosquito I got the virus of Africa without noticing it. And such a virus never leaves you. An old african saying expresses this as follows: “you may leave Africa but it will never leave you”. The desert is hostile to any kind of life. You need a lot of humbleness to go over it unpunished. Frivolity seldom forgives. Far away from our wealthy society I feel reconciled with myself. Ability to adapt is a factor that my disease forced me to develop early. Such an ability is essential in the world largest desert: the Sahara. I participated to many raids in different countries: Tunisia, Morocco, Algeria, Mauritania, Senegal and Mali. But I experienced the gre test excitement in Lybia. Driving across the Murzuk dune was so overwhelming, it impressed on my memory for ever. Human being finds itself pathetically small surrounded by cathedral dunes 1000 feet high. Life is hanging by a thread, at anytime you can be knocked over. After this last challenge it will be time to say good bye to the Sahara. My physical strength is fading away. Time for such ventures is soon over. However I hope I will not suffer too many fever bursts. As for Africa malaria is dormant, it never leaves you...

Nicolas, the younger brother

“Already as a child I was attracted by the extreme. Certainly not a very adequate inclination! What pushes me to strive for the adrenalin shock when facing the forces of Nature? Me, a fragile being, also diminished by this stupid genetic disease. Bungee jumping, parachute, desert raids with Alexandre... everything to prove myself that spirit strength can help me satisfy my thirst for adventures. As my physical ability diminishes my quest becomes more urgent. The serenity acquired through these activities becomes slowly the only source of quietness. To look forward is the best way to forget the dull future. Alongside my diminishing physical ability I have decided to introduce my professional skills in my trips. As a movie editor and director I strive to capture every emotion that other people may probably not experience.The job is far from being easy. The disease slows down my mobility and I have to anticipate the unexpected and to cope with the strange smiles or faces I sometime meet. To achieve good quality pictures in an extreme environment is difficult. After 7 years of activity in advertising films I swore I would never again take a camera. This is another thing that the disease taught me : never say never!”

Why the Sahara?

To complete a loop the loop. Alexandre has roamed the desert like a dromedary for the last 6 years, not on foot, his legs no longer carry him but his 4WD jeep does this job and technical achievement. What now would be more fantastic than flying above these immense dunes? Furthermore, it is obvious that the Sahara will create enormous interest from the media. Our main goal is to increase public awareness of these neuromuscular diseases. The Sahara is considered the largest desert in the world, dividing the African continent from East to West. On this gods forsaken land, the temperature rises and fall from 58°C to –18°C. Not the most friendly environment...

The trip

The detailed map of the journey is not ready yet. We are working hard to draw a precise fly plan. It will probably be a trip from Morocco, Algeria, Tunisia, Libya. But that is not fixed yet. The most important aspect is to take into account the state of health of Alexandre and Nicolas and to limit the stages accordingly to a maximum of 300 km with stopovers.

Popularization through the media

The philosophy of this project is based on the concept: the crazier the project is the bigger the impact it will have on the public. In our own crazy way we want to change people’s ideas – to live a dream to push onself to the limit to take up the challenge and to give a positive image of the disease, and by doing so, put a smile on all the faces informing them at the same time the harsh reality of these neuromuscular diseases. Our motives are also to get people talking about us in organizing an incredible event with maximum media coverage. Our tool: an ultralight

Download our Pdf in english :

Telethon 2009 and audio-visual broadcast

Our media act will mainly be a broadcast of the event on the channels France2 (France), France3 (France) and RTBF (Belgium) in December 2009, during the Téléthon. We will make a documentary about this amazing story. The current dealings with the AFM are looking good. The AFM takes part in the Téléthon which concern several million people on TV. Furthermore, we will visit other press and TV medias to get larger and maximum media coverage.

The press

We will also use the press, our aim is to flood the press with articles and press kits. The specialised papers will be informed about our project without any exception. As Alexandre was a reporter he has the “know how”.

Video documents

Nicolas has a personal interest as he wants to make a video documentary of the trip. Nicolas was a professional producer of advert movies and video clips.

Publication of a book

We will write down and publish a novel based on our trip. It will not be a simple log or travel book because we guess that only a novel will be able to spread the adventure to a large panel of readers. Our goal is to reach as many people as possible. We defend a cause that we trust and we are ready to do whatever is possible to achieve our objectives.

Radio

After the creation of our website, some radios started made contact with us to keep informed about this event as they wants to cover the event. That was already done by some local radios and Classic21, a large public radio in Belgium.

Internet

In order to spread our message to the maximum, we are using internet as far as possible. All the information available and the project is on our website.

Our goal is to make a Buzz (marketing technic that consist in making a lot of “noise” regarding a project).

To achieve this objective, we have created a group on Facebook, and 24 hours later they were almost 250 registered people. And this number is increasing constantly. You, also, can register for free on Facebook, the group is: defi-myopathie

The logistics

We are not completely crazy: because of the myopathy, we won’t be able to do this adventure alone as Alexandre is not completely autonomous any more. Nicolas is young and still has enough muscular resources to take part in this adventure. The goal of this event is not to go alone, we need a minimum of help for the logistics. Three people will take part to our trip. One of them is a medically trained (nurse), and the other one is an accomplished desert ultralight pilot. Day to day living with this disease is physically incredible difficult and a maximum precautions must be taken to insure the well being of Nicolas and Alexandre during this trip When they stop, the rest of the team will do all the preparation of the next day to be sure that it will be problem free. Without this staff, Nicolas and Alexandre can’t even imagine this challenge and the staff is as important as Nicolas’s and Alexandre’s.