Maratonabili and LND Famiglie Italiane will be at this year's Tor des Géants - the most fascinating and
tough endurance-trail race in the world - once again participating with their smiles and their dreams.
The Valle d’Aosta region, the Municipalities involved and the whole organisation of the Tor des Géants
have enthusiastically embraced the project for a joint team formed of representatives of the Maratonabili
and of LND Famiglie Italiane (Federico Mazzuchi, Franco Zomer, Maurizio Monti and Federico Gilardi) to
compete in the race.
This will be a challenge within the challenge, an opportunity for everyone to share their dreams; the
team will set off pushing some wheelchairs along the very first part of the route to the leaving barrier
at Courmayeur, then they will individually attempt the Tor des Géants (330 Km, 24000 m D+).
This is a unique opportunity to raise awareness of these two non-profit organisations whose missions
and goals are different but that march to the same tune, or rather the same slogan - “Facciamo correre
i sogni” (Let's race our dreams) - and work to bring joy and hope to the less fortunate.
The ingredients for the challenge are all there - a tough route, determined participants and truly
magnificent horizons to conquer. Let's try to describe the event inside the event of 13 September: just
being at the starting line of the Tor alongside phenomenal athletes is a WIN, particularly for the young
people in wheelchairs suffering from Lesch-Nyhan disease, (www.lnd-it.com) an extremely rare, insidious
genetic disorder that strikes at a very early age and inhibits children's movement, meaning they can't walk
or talk. It affects their health and sufferers have an over-production of uric acid that can cause severe
kidney problems; they also have serious neurological issues that forcibly trigger behavioural disorders, so
most of them require preventive restraints day and night. And yet here they are, bringing with them their
smiles and their dreams, ready to take up the challenge, to fight against the diagnosis of an impossible life.
It's also a win for the Maratonabili, (www.maratonabili.org), young people in wheelchairs, or “pushers”
who have participated in minor and major races for many years now, demonstrating that disability is not a
world apart but a part of the world.
It is a win for the families of the LND sufferers, who have travelled to Val d’Aosta from Liguria, Lombardy,
Piedmont and Tuscany to represent the Italy-wide, often isolated families, but closely tied by their
solidarity and mutual affection as well as the European Federation LND
(www.facebook.com/LNDEurope?fref=nf) that groups together Spanish, French, English, German, Swiss
and Austrian families and associations, for the toughest challenge, to drive scientific research towards
understanding this disease, for which there is still no treatment, and to win that even tougher race.
Thanks to everyone who will demonstrate again this year that being RARE doesn't mean being ALONE,
by visiting our stand and helping support research with your contribution, also through our legendary
t-shirts.
