is a major Italian charity and is responsible for raising and distributing
funds for biomedical research in Italy. The mission of Telethon
is to advance research towards diagnosis, prevention and cure of
human genetic diseases. During the first eleven years of activity,
Telethon has invested a total of about 143 million Euro in research.
Telethon-funded researchers, alone or in collaboration with other
laboratories, have successfully identified and characterized the
genes and the mechanisms involved in several hereditary diseases
and have reached important clinical achievements.
first Telethon (Television Marathon) was inaugurated in the United
States in 1966 by actor Jerry Lewis with the aim of raising funds
for muscular dystrophy. The huge success of the show led the French
dystrophy association AFM to repeat this experience in France in
1987 which was equally successful. In 1990 AFM granted the right
to use the Telethon trademark in Italy to a the Comitato Promotore
chaired by Mrs. Susanna Agnelli, under the auspices of the Italian
muscular dystrophy association, Unione Italiana per la lotta contro
la Distrofia Muscolare (UILDM). Fund-raising depends primarily on
a 32-hours solidarity marathon presented in December on RAI TV channels,
but also relies on different events taking place during the year,
as well as on corporate donations.
May 1998 Telethon has been recognized as an ONLUS (Organizzazione
Non Lucrativa di Utilità Sociale), a status that qualifies
Charities complying to the requirements established by Italian law
Research funding and the
supports scientists within academic institutions throughout the
country to work on a wide range of projects in the fields of genetic,
biochemical, biophysical, molecular biology, cell biology and clinical
research, as well as in gene therapy. This extensive and forward-looking
research program is carefully coordinated with the review of a scientific
committee, an international panel of independent experts who
evaluate all research proposals received by Telethon, ensuring the
highest quality and the greatest potential for translation into
treatment for patients.
In its first ten years of activity, Telethon has funded more than
1,566 research projects, 240 fellowships and created three research
Institutes, for a total of 143 million Euro.
The three research Institutes are:
(Telethon Institute of Genetics and Medicine), which is devoted
to the study of human inherited diseases, with a particular emphasis
on gene identification and functional studies. Eye development diseases
and different neuromuscular, developmental and metabolic disorders
are currently the targets of TIGEM's investigations.
(San Raffaele-Telethon Institute for Gene Therapy of Genetic Diseases),
a joint venture with San Raffaele, focused on the development of
gene therapy protocols for inherited diseases. Its activities are
detailed in another section of this brochure.
a technology laboratory focused on developing highly innovative
aids for the disabled.
addition, Telethon has initiated a Career Award Program in 1999
with the aim of allowing independent researchers to settle their
activity in Italy through a renewable five-year salary and research
HSR-TIGET Telethon funds several research projects carried out at
the San Raffaele Science Park, and supports a YAC
Screening Center and a Core
Facility for Mouse Conditional Mutagenesis. The latter was
set up to provide transgenic and knock-out mice to Telethon grantees.
Susanna Agnelli, President
Omero Toso, Vice President
Carlo Ferdinando Carnacini
Salvatore Di Mauro
Niccolò Contucci, Chief Communication and Fund-raising
Angelo Maramai, Chief Administrative Officer
Francesca Pasinelli, Chief Scientific Officer
Via G. Saliceto, 5a - 00161 Roma, Italia
Tel. +39 06 440151
Fax +39 06 44202032
Via Nino Bixio 30 - 20129 Milano, Italia
Tel. +39 02 2022171
Fax +39 02 20240688