Launched on Friday 3 December, the Telethon, this major popular and media event for collecting donations for research on rare diseases, was able, this year, to reinvest in towns and villages in France. And that makes a difference in the amount of pledges.
The counter displays, Sunday, December 5, 73 622 019 euros, a clear increase compared to the total of 58.3 million euros promised during the duration of the Telethon in 2020. A total of 77 million was finally recorded last year on the meter, it remaining open for some time; but because of the Covid-19, this unparalleled event was reduced to its retransmission on France Televisions channels and to challenges on the internet.
The amount of pledges this year is close to that of the 2019 edition, before the country experienced the Covid-19 epidemic and containment. The counter was established at 74.6 million euros promised, for 87 million collected.
Friendliness and party spirit
“We were able to reconnect with conviviality and the spirit of celebration in the field”, while respecting barrier gestures, welcomed, to Agence France-Presse (AFP), the president of the AFM-Telethon organization, Laurence Tiennot-Herment. Despite the inclement weather in many departments, events were held in nearly 10,000 municipalities.
Sponsored this year by rapper Soprano, the 35e This edition of the Telethon has, as every year, highlighted the volunteers, researchers and families mobilized for this charitable marathon. “The faces of the Telethon are all those who have been treated thanks to donations made to research”, insisted Laurence Tiennot-Herment.
Thanks to advances in gene therapy, which consists of introducing genetic material into cells to treat a disease, it was notably possible to put on the market, two years ago, a treatment for spinal muscular atrophy, a neuromuscular disease that condemned previously babies to early death.
“If it had not been for this treatment, the children would not have been able to be there tonight to testify. But other families are now wondering: when will there be an emergency treatment for my illness ”, underlined Mme Tiennot-Herment.
Today, seventeen gene therapy drugs have been approved, five of which have been directly supported by AFM-Telethon, and eleven others have benefited from gene therapy developed for severe genetic immunodeficiencies. This research was carried out in particular by the Généthon, the cutting-edge laboratory of the Telethon which celebrated its 30th anniversary last year.
Find treatments for the greatest number
Other trials are multiplying and could lead to new therapies in the years to come. One treatment is, for example, being tested to cure myotubular myopathy, a rare genetic disease of skeletal muscles.
Thanks to research supported by AFM-Telethon, a first French cell therapy trial was also launched at the end of 2019 for rare diseases of the vision, after the development of a cell patch developed from embryonic stem cells. human.
Beyond rare diseases, which affect 3 million people in France, the innovations born in the laboratories supported by the Telethon also inspire therapeutic solutions for very widespread diseases: neurodegenerative diseases, cancers, etc.
“Existing technologies do not make it possible to produce gene therapy drugs on a large scale”, warns Laurence Tiennot-Herment. One of the future challenges will therefore be to be able to make treatments available to the greatest number of patients.