LND Famiglie Italiane ONLUS
The Association of Italian families involved
in the fight against the Lesch-Nyhan
SUPPORT THE INITIATIVES OF FAMILIES. We need your help.
MAKE A DONATION!
A challenge within the challenge. [ 7th-14th September 2014 ]



Give the GO, with this extraordinary event, to the LND European Federation.

 





An opportunity for all participants and for those who love the Tor Des Geants to share dreams

The ingredients of the challenge are all there: the difficult path, tenacious protagonists, and magnificent horizons to conquer. We are trying to narrate the event within the event of the 7th of September.

To be at the start of the Tor along with phenomenal athletes is already a VICTORY in itself!

Who knows how many people will think this at the starting line, in the splendid setting of Courmayeur, where excited guys in wheelchairs and cheerful and boisterous "pushers" will open the race.

This is certainly what the boys in the wheelchairs think, affected by Lesch-Nyhan   a rare genetic syndrome that affects children in the movement making them unable to walk or speak. It affects their health and they suffer because of a metabolism altered by important nephrological problems, but mostly it afflicts them with a serious neurological problem that narrows their behaviour and the majority of them are forced to live day and night tied to control involuntary self-harness. Yet here they are present, with their smiles and their dreams, to challenge the diagnosis of an impossible life.

This is what the runners of Maratonabili think , guys in wheelchairs or "pushers" that for many years now, have shown by their presence also in important competitions, that disability is not a world apart, but a part of the world.

This is what Maurizio, Franco, Omar and Federico think: The team consisting of representatives of the MaratonabiIi and of the Italian association LND (www.lnd-it.com), that will try again this year to complete the Tor individually with the colours and the slogan of these guys and that will start pushing the wheelchairs after the start along the short stretch of Via Roma, thanks to the attentive and available hospitality of the organizers of the TOR 2014.

This is what the families of the LND guys think, arriving in Val d'Aosta, from Liguria, Lombardy, Piedmont and Tuscany to give the GO, with this extraordinary event, to the LND European Federation, which brings together families and Spanish, French, English, German, Swiss and Austrian associations, for the most difficult challenge, to push the scientific research to the understanding of this disease, still without treatment, and to the victory on the same.

The participation in this challenge is offered to all those present at the start and then is re proposed, with a space for information and fundraising, Sunday at the awards ceremony, thanks to the synergy between the Tor organizations, Maratonabili and LND, that with this event will make the "dreams of the participants run" and they hope to realize the dream of purchasing a racing equipped wheelchair for people with Lesch-Nyhan syndrome (an aim, technically not simple, but exciting).

As the slogan of the team says, all together, "Let's make the dreams run!” Thanks to all those that will prove, once again this year, that to be RARE don’t involve being ALONE!


Photo Gallery
    



  
 
Attachments
INSIEME...FACCIAMO CORRERE I S

 
LND Famiglie Italiane ONLUS on the web:
 
Syndrome
Introduction
Diagnosis
Documents
Stories
  Association
Presentation
Executive
Scientific Committee
Statute
  Initiatives
In progress
Archive
  Support
Make an offer
Associate with LND
Merchandising
  News
In progress
Archive
  Links   Contacts   Legal
Disclaimer
Privacy Policy
Cookie Policy
www.lesch-nyhan.eu
Associazione LND Famiglie Italiane ONLUS
All Rights Reserved | Fiscal code 95145920104 | info@lesch-nyhan.eu
web site created byToday Studio