Telethon
What is Telethon
Telethon was established in Italy in 1990 by Susanna Agnelli and the Unione Italiana Lotta alla Distrofia Muscolare (Uildm) to fund and promote scientific research on genetic disorders. Telethon was awarded the High Patronage of President of the Republic and is currently chaired by Luca di Montezemolo.
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Genetic disorders
Genetic disorders are caused by a mistake in an individual's DNA and are usually hereditary. They can affect any organ and show up at any age: the course of most of them is serious or lethal already during childhood and no effective therapies have been found so far.
When taken individually, genetic disorders are rare diseases, then neglected by large public and private investments, which mostly fund research on most common diseases. However, the causes of a genetic disorder often involve basic and vital mechanisms for a man's life and their understanding may be also useful for the study of more widespread diseases.
According to Eurordis (a nonprofit organization that gathers the European associations of rare patients), rare diseases globally affect 24 to 36 million European citizens, equivalent to the total population of Holland, Belgium and Luxembourg. 3-4% of European children are estimated to be affected by a rare disease.
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Collected funds
Thanks to a crystal clear management of funds and a merit-only-based funding mechanism, Telethon is now acknowledged in the world as an example of Italian excellence. Scientists of international renown from all over the world guarantee our donors transparency and absolute independence in the selection of research projects.
Results achieved
Telethon has helped the progress of Italian research on genetic disorders and achieved important results, first of all the cure for a serious form of immunodeficiency, the Ada-Scid, a disease that forced affected children to live in a sterile bubble (hence the name of "bubble children"). Additionally, Telethon successfully implemented a genetic therapy procedure for the cure for a form of blindness, the Leber's congenital amaurosis.
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Next targets
Clinical trials on Metachromatic leukodystrophy, a neurodegenerative disease, and the Wiskott‐Aldrich syndrome, a serious immunodeficiency, started this year: trials will involve 14 children over three years and, if the hoped-for results are obtained, two more terrible diseases will be finally defeated.
How to donate to the Ferrari Museum
At the Ferrari Museum, you can help the Telethon research on genetic disorders as follows: • by purchasing an admission ticket whose price includes an extra amount, which will be fully donated to the Foundation. You can purchase your ticket on line or directly at the Museum's ticket office. • by using the money boxes located by the entrance and in the exhibition halls. • by purchasing the CD “Turn Away” by the Red House Blues Band in the Museum shop and the Ferrari Store in Maranello. Alternatively, you can ask museo@ferrari.comto ship the CD to your address.