The final counter shows 73,622,019 euros, a marked increase compared to the total of 58.3 million euros raised during the duration of the Telethon in 2020. A total of 77 million was recorded last year at the counter, this one. ci remaining open for some time after the event.

The fundraising event for research on rare diseases, launched Friday evening, was able this year to reinvest in towns and villages in France.

"We were able to reconnect with conviviality and the spirit of celebration on the ground", while respecting barrier gestures, welcomed the president of the AFM-Telethon organization, Laurence Tiennot-Herment to AFP. .

Despite the inclement weather in many departments, events were held in nearly 10,000 municipalities.

Last year because of the Covid-19, this unparalleled popular event was reduced to its retransmission on France Televisions channels and to challenges on the internet.

Sponsored this year by rapper Soprano, the 35th 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 able to be 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, two years ago it was notably possible to put on the market a treatment for spinal muscular atrophy, a neuromuscular disease which previously condemned patients. babies to early death.

Clinical tests

"If it had not been for this treatment, the children would not have been able to be there this evening to testify. But other families are wondering today: when will a treatment for my disease be urgent? ", underlined Ms. Tiennot-Herment.

Today, 17 gene therapy drugs have been approved, 5 of which have been directly supported by AFM-Telethon, and 11 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.

Other trials are multiplying and could lead to new therapies in the years to come.

A treatment is for example being tested to cure myotubular myopathy, a rare genetic disease of skeletal muscles.

A clinical trial could start in 2022 for girdle myopathies, which manifest as progressive muscle degeneration.

Another is underway to treat a rare liver disease.

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 ...

"Existing technologies do not make it possible to produce gene therapy drugs on a large scale", warns Laurence Tiennot-Herment, however.

One of the future challenges will therefore be to be able to make treatments available to the greatest number of patients.

© 2021 AFP