The Telethon 2016 takes place Friday 2 and Saturday 3 December. The charity event organized by the Association française contre les myopathies celebrates its thirtieth edition at the Hippodrome de Longchamp. As usual, the issuance of thirty hours was broadcasted by France Télévisions, with this year a sponsor well-known : the singer Garou, who had already experienced this in 2014. In thirty years, research on rare diseases has progressed considerably, notably thanks to the donations of the Telethon. After some difficult years because of the crisis, the AFM hopes to see the gifts, ironing boards above the bar of 100 million euros. Back in numbers on an event that is dear to the French.
In 1986, Bernard Barataud and Pierre Birambeau, two fathers of children with myopathy (a degeneration of muscle tissue) to travel to the United States to attend a marathon of television, the Telethon, aimed at raising the awareness of Americans to the disease. There, the charity has existed since 1954 and, since 1966, in its national form. Seduced by the concept, the two dads decide to import it in France. To convince Antenna 2, they rely on the practical : the gene for Duchenne muscular dystrophy has just been discovered and the progress in medicine. The chain accepts and in December 1987, the first Telethon French is released, with as sponsor of Jerry Lewis, comedy, american to the origin of the Telethon american national.
today, the Telethon continues in France while managing to maintain a level of gift relatively stable, between 90 and 100 million euros. We can’t say the same of its older brother american. The show created by Jerry Lewis in 1966 has been cancelled in 2015, due to “new ways of watching television and doing charitable donations”. One stop in particular, motivated by the success of the Ice Bucket Challenge and its derivatives, capable of attracting users ‘ attention to a disease more easily.
2 178 980 593 euros
A little more than 2.1 billion euros. This is the sum harvested during the 29 editions of the Telethon. A colossal figure, which can be explained by the explosion in donations during the first twenty years. Of $ 29.7 million in 1987, the total sum collected has reached a record level of 106.7 million in 2006. Since then, the economic crisis has hit the wallet of the French, but they continue to remain generous : 91.5 million euros of donations on average since 2009. Such sums are of the Telethon, the French the biggest collection charity in the world. The Telethon captures him only 2% of the donations of the French people.
€ 99.5 million
The donations are they doing to advance research ? The question arises regularly. A response element is available in the annual financial reports of the AFM-Telethon. Thus, in 2015, the association has recorded 158.6 million euros in revenues, of which 93 million from the Telethon. In the same year, the AMF has spent $ 121.5 million euros for its activities. Why such a gap between budget and expenditure ? "Given the fragility of the Telethon, which usually represents the vast majority of its resources, the association's strategy is to have financial reserves to be able to ensure the continuity of its long-term research programs, and its actions towards the families," the report said activity in 2015.
The expenses are divided into three categories : management fees ($ 9.1 million), the costs of collection of the donations ($ 12.9 million) and finally, the social missions to the tune of $ 99.5 million. It is the heart of the action of the AMF, where will the gifts of the French. There are three missions. "Heal" is the funding of research on rare diseases, therapeutic trials, and strategic programs. "Help" includes support measures such as the construction of care facilities, services to families and the "innovative projects". "Communicate" is the pole which allows the operation of the website of the AFM, the awareness campaigns...
3 million patients
The donations forwarded by the Telethon will benefit the research against rare diseases, which affect about three million people in France. The AFM focused on patients with duchenne muscular dystrophy. Today, the 6,000 genoa have been identified and the gene therapy trials initiated in the years 2000 are bearing fruit. It is now possible to stop the advance of a myopathy.
Already with Généthon Bioprod, a huge laboratory located in Evry, AFM-Telethon and Bpifrance have joined to expand the complex, with the goal of creating the largest european centre for the development and production of gene therapies and cell, with a projected area of 13 000 m2 from 2019," says the association in its activity report of 2015. The idea is to create a platform for large-scale production in view of the commercialization of gene therapies. The treatments are expensive, but the AFM maintains its motto : to create innovative medicines at a price "fair and controlled".
This is the number historic to make a donation to the Telethon. Open from the beginning of the show Friday, the procedure is very simple. Just call and inform his promise of gift as well as his address. The platform is managed by the Lions Club. A few days after, you will receive an envelope to return it with a cheque. This is not the only way to give to help the research on duchenne muscular dystrophy. It is possible to make a donation on the Internet, on the website of the AFM. All donations receive a tax reduction of 66%. In fact, a donation of 100 euros costs, in reality, 34 euros for the donor.