Associazione Comitato Aurora

Associazione Comitato Aurora's logo

The Associazione Comitato Aurora Onlus is a No Profit Association, founded in Rome (Italy) in 1999. Its main goal and effort is that of financing scientific research against Adrenoleukodystrophy (ALD), a very rare genetic disease which affects mainly children, and right in the name of one of them, Nicolò Gabriele, that this Association came to life.

Goals

“Doctor Mum and Dad”

The idea is that of contributing towards the families of children affected by ALD and other neurological disorders, giving them a safety net and sharing, in which they can feel less alone. The families of children with serious diseases, which are discharged from the hospital, face enormous daily difficulties, and in most cases are not adequately prepared to respond to both emergencies that may arise suddenly, as well as simple daily care. Frequently these are patients whose clinical conditions prospect serious mental and permanent disabilities, adding to all this all the complex problems that characterize them in terms of clinical and socio-familiar issues. Therefore, these patients need special attention that often their families are not able to handle. For the characteristics of diseases like ALD - which at present does not respond effectively to any treatment or specific therapy - it's an ethical duty that of striving for the patient and his family, trying to replace a relatively inaccessible therapeutic protocol with a home care, the most comprehensive and effective as possible, mainly focusd on the solution of practical problems which affect the existence and condition of the patient and his family. Despite hospitalization is and must remain a key reference point, the patient who is stabilized for months or years, can and must be assisted at home and, in order to ensure adequate welfare benefits, family formation becomes a fundamental tool. The goal of the project is therefore to help the family that is experiencing the tragedy of the disease in implementing a quality of life based on comfort, sympathy and compassion, and the solution of everyday problems both medical as well as of assistance.

The purpose is twofold:

  • On one side, to create a network of home care, according to the needs of patients with rare diseases, which aims to treat and monitor patients to keep them in the best possible physical condition, so that they may one day be ready to deal with treatments, we hope, will be available in the next future
  • On the other side, put parents and families in optimal conditions to give them the most appropriate and individualized care in a calm and safe environment.

Also, thanks to a collaboration with Prof. Angelo Vescovi, ALD has entered the research protocol on neural stem cells to treat neurodegenerative diseases. We therefore constantly monitor the evolution of this project, ready to give our contribution.

Events

Award of the Solidarity Champions' Cup 2008, in Siena

In order to find the necessary amount of money for research over the years, numerous sporting events, publishing, culture and art (all made with the participation of important personalities from the world of professional sport, entertainment and journalism sports) have been held. Among others, the following personalities joined our cause: Fiorello, Bruno Conti, Giordano Bruno, Abel Balbo, Vincent Candela, Roberto Mancini, Fabio Capello, Serse Cosmi, Paolo Bonolis, Teo Mammucari, Enrico Brignano, the "Fichi d'India", Pino Insegno and "La Premiata Ditta", Fabrizio Frizzi, Max Giusti, Luciano Spalletti, Jimmy Ghione, Bruno Vesica, Andrea Lo Cicero, Simone Vergassola, Daniel Galloppa, Massimo Maccarone, David Dunn, Mario Mattioli, AC Siena Football Club, the Association Calciattori Team, National Comedians, the RaiSport selection, and many others. Also, after a brief stint in 2000 with www.ibazaar.it website, where some auctions have been held for charity, from 2004 on this important activity, thanks to the cooperation established with the www.ebay.it website, has come to new life. The activity of support to those in need is also addressed in other directions. proviPing, for example, Alitalia airline tickets for travel for therapeutic purposes through the national project "Charity Program Mille Miglia". In 2004 an important cooperation agreement with the Municipality of Rome has been signed - the project "Romamor" - which materialized into a real team effort between the City of Rome and the staff of the "Associazione Comitato Aurora Onlus" for the achievement of objectives. On 30 May 2005 Silvia Gabriele, mother of Nicolò, for her mother's courage and her efforts with the "Associazione Comitato Aurora Onlus", gained at the Capitol, right from the hands of the Mayor of Rome, the "Sympathy Award 2005", a recognition which is very important in Rome.

Fundings

Over the years, thanks to our activity in organizing events and - above all - thanks to the effort of many personalities and volunteers who dedicated their time and their work, it has been possible to finance several structures and projects.progetti.

2007 - 2008

  • Funding of € 45.000 for the "Doctor Mum and Dad Project" to support and assist parents with children with serious genetic disorders, through home care.

2006 - 2007

  • Funding of € 600.000 to Prof. Vescovi within the project "Brain Workshop" realized through "Associazione Neurothon".
  • Funding of € 15.000 for the course "Doctor Mum and Dad" to parents with children with serious diseases.
  • Funding of € 35.000 for the "Home Care" project, providing home care for children suffering from ALD and similar diseases throughout Italy.

2003 - 2006

  • Establishment of a scholarship of € 140,000 for four years to test a new therapy using growth factors that stimulate the regeneration of m yelin and that are listed as important in the treatment of neurodegenerative diseases. The project was conceived and followed by Dr. Risuleo and Dr. Di Ilio, University of Rome.

2001 - 2003

  • Funding of € 25,000 in a research protocol on possible evolutions of the IGF-1 [...] and for stem cell research at the University of Padua - Department of Microbiology and Virology, together with Umberto I Hospital of Ancona - Clinic for Endocrinology. (Dr. Barzon - Prof. Boscaro - Prof. Palù).

2000 - 2002

  • Funding - in a two years period - of about Liras 100,000,000 (€ 50,000) for the support, research and therapy of IGF-1 for Nicolò and other children who joined the research protocol. (Dr. Cappa - Dr. Cianfarani).

2000 - 2001

  • Funding, during the year, of around Liras 400,000,000 (€ 200,000) for a project for stem cell research at the Hospital Burlo Garofolo in Trieste - Center for rare diseases. (Mr. Severini - Mr. Bemba).
  • Adrenoleukodystrophy
  • Myelin
  • Charity

it:Associazione Comitato Aurora