The 37^e The telethon edition will take place on Friday, December 8th and Saturday, December 9th and will be broadcast live on public television channels for 30 hours. The charitable and popular event hopes to get even betterin 2022, despite inflation and tight budgets for families. This televised marathon is sponsored by the singer Vianney and hosted by Sophie Davant, Nagui and Cyril Féraud. It begins on Friday evening and ends on the night of Saturday to Sunday.

In addition to field collections and donations by telephone (3637) and via the Internet (téléthon.fr), there is a marathon of Gaming and a raffle are on the program.

The 2022 edition, which fully returned to the field after two years of the Covid pandemic, had raised 90.8 million euros, the best result since 2016, although donations from the French to clubs stagnated for the first time in ten years. The organizing association AFM-Téléthon has provided around 58 million euros for research and development of new therapies in 2022. “If the telethon doesn’t carry everything alone, it has a leverage effect”emphasizes 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 one “Obstacle Course”He was diagnosed with a form of limb-girdle myopathy, a condition that causes sometimes generalized muscle degeneration. “I live with pain. I’m still walking, I’m working but not 100%, I need a lot of rest, she testifies. After a long day at work, sometimes I lie on the couch and can’t get up: I have to call my husband. »

For his pathology, a gene therapy trial was launched 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 for muscle pain, corrections in the appearance of the muscle, the first patient treated walks better, faster, stands up more easily”Details Frédéric Revah, General Director of Généthon.

95% of rare diseases remain untreated

But 95% of rare diseases remain untreated or even undiagnosed, and research continues to require funding. On the family side, “The impatience is even greater than fifteen or twenty years ago because the first victories are here and have really accelerated since 2018-2019.”explains Laurence Tiennot-Herment.

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

Early detection, even before the first symptoms appear, 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 so diagnosed have been treated and a fifth is being treated “probably at 19 days”greets the President of the AFM-Téléthon.

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

200,000 volunteers in more than 10,000 communities

About ten patients with Crigler-Najjar syndrome (a rare liver disease) have been treated with gene therapy in France, Italy and the Netherlands. If the next phase of the study confirms benefit in more patients, an application to register the treatment will be submitted to French and European health authorities.

Beyond the research topics, the telethon remains a unique event. It mobilizes more than 200,000 volunteers and is available in more than 10,000 communities, with a series of unusual challenges: Farandole of several hundred people in Tonnerre (Yonne), swimming pool 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 in this edition will make several references to the 2024 Olympic Games in Paris.