For its 37th edition, the Telethon wants to keep an Olympic form

The 37^e edition of the Telethon takes place, Friday December 8 and Saturday December 9, for thirty hours of live broadcast on public television channels. The charitable and popular event hopes to do better than in 2022, despite inflation and tight budgets for families. Sponsored by the singer Vianney and presented by Sophie Davant, Nagui and Cyril Féraud, this televised marathon will begin Friday evening and end during the night from Saturday to Sunday.

In addition to field collections and pledges of donations by telephone (3637) and by Internet (téléthon.fr), a marathon of gaming and a raffle are on the menu.

The 2022 edition, returning completely to the field after two years of the Covid-19 pandemic, had collected 90.8 million euros, the best result since 2016, despite a stagnation in French donations to associations for the first time in ten years. The organizing association, AFM-Téléthon, has dedicated some 58 million euros to research and development of new therapies in 2022. “If the Telethon is not going to carry everything alone, it has a leverage effect”underlines the president of the AFM-Téléthon, Laurence Tiennot-Herment.

Margot, 26 years old, is one of the sick ambassadors of this 37^e editing. At 20, after a ” obstacle course “he was diagnosed with a form of limb-girdle myopathy, a condition leading to sometimes generalized muscular degeneration. “I live with pain. I still walk, I work, but not 100%, I need a lot of rest, she testifies. After a long day of work, I sometimes lie on my couch and can’t get up: I have to call my husband. »

For his pathology, a gene therapy trial has started in France and Denmark, based on work carried out for more than twenty years at Généthon, an emblematic laboratory of the AFM-Téléthon. The very first results are encouraging: “decrease in the biomarker of muscle pain, corrections in the appearance of the muscle, the first patient treated walks better, faster, gets up more easily”details Frédéric Revah, general director of Généthon.

95% of rare diseases remain untreated

But 95% of rare diseases remain without treatment, or even without diagnosis, and research still needs funding. On the family side, “the impatience is even stronger than fifteen or twenty years ago, because the first victories are there, and have really accelerated since 2018-2019”declares Laurence Tiennot-Herment.

Ibrahima, 2 and a half years old, suffers from the most severe form of spinal muscular atrophy, a disease which condemns babies to early death. Today, he is frolicking thanks to a gene therapy born from work financed by the Telethon, administered from the age of 6 weeks. More than 3,000 babies have been treated worldwide.

Early detection, before the first symptoms, remains crucial. Since January, two regions, Grand-Est and Nouvelle-Aquitaine, have been experimenting with genetic screening for spinal muscular atrophy at birth. Four babies thus diagnosed have been treated, a fifth will be “probably at 19 days”greets the president of the AFM-Téléthon.

At the same time, 38 therapeutic trials in humans, supported by the association, are underway or in preparation for 29 different diseases.

200,000 volunteers in more than 10,000 municipalities

Around ten patients suffering from Crigler-Najjar syndrome (a rare liver pathology) were treated with gene therapy in France, Italy and the Netherlands. If the next stage of the trial confirms the benefits in more patients, a request for registration of the treatment will be made to the French and European health authorities.

Beyond the research issues, the Telethon remains a unique event. It mobilizes more than 200,000 volunteers and is available in more than 10,000 municipalities, with a number of unusual challenges: farandole of several hundred people in Tonnerre (Yonne), swimming pool lap marathon in twelve hours in La Guerche-de-Bretagne (Ille-et-Vilaine), etc.

“Faster, higher, stronger”: the Olympic motto also applies to the Telethon, which during this edition will make several nods to the Paris 2024 Olympic Games.