The 2024 edition of the Telethon is moving ahead a little and will take place on the weekend of November 29/30. We talk about this event in Moselle, its issues, its ambassadors with the Moselle-Est coordinator.
Sound No. 1 – More than 150 events and activities for the 2024 edition of the Telethon in Moselle
Gérald Brun, coordinator of the Telethon in Moselle-Est
Why is the event this year brought forward by a week?
Indeed, it has been brought forward by one week, this is the first time since 1987 because the reopening of Notre Dame de Paris will take place on December 7 and 8 with all the heads of state and crowned heads from around the world, so France Télévision has preferred to move forward a week so as not to be drowned in this global event.
The principle of the Telethon is always the same. Organize events and obtain donations for research and treatment of sick children. How many events are offered in the coming days?
In Moselle, more than 150 events will be organized throughout the sector. In Lutzelbourg for example, you will have 24 hours of running and cycling, so you can go running at 2am. You can also go to Saint-Avold where there will be a big concert on Saturday evening with more than 200 artists but you can also go to Sarreguemines with the JSP who will be in the supermarkets to sell key rings.
In Moselle, are there concrete cases of children who have seen their lives change thanks to the Telethon?
Yes, of course, we're going to talk about Elena. She was the Telethon ambassador in 2016, she lives in Cocheren and she suffers from Crigler-Najjar disease, it is a liver disease which requires patients to sleep 12 hours a night under UV lamps without pajamas or blankets. . Thanks to the Telethon, she received a candidate drug in July 2023 and since October 2023 she has been cured. This means that since October 2023 she can have sleepovers with her friends without needing to have the portable kit and be under the lamps. This healing also allows her to no longer be constantly stressed.
Today, are the Telethon and researchers finding new, encouraging avenues for certain diseases?
Yes, indeed, you will be able to see during the 30 hours Sacha who does not live far from us, he lives in Obernai, he suffers from Duchenne muscular dystrophy. He is one of 5 children in the world who can benefit from a trial. He was treated with gene therapy. This disease is currently fatal with muscle degeneration. So he is treated, he is 8 years old, he continues to walk, run and play sports. For a child without treatment this would not be possible. So these are really very encouraging ideas and that's why we have to continue to give because a human trial costs between 50 and 100 million euros. Currently, the AFM Telethon supports 30 human trials. Can you imagine the money we still need to continue? And I tell you, we are about to go through a lot of medications like Leber's disease where you will be able to see Tim who lives in Strasbourg, 21 years old, who lost his sight and who regained part of his sight thanks to the Telethon . We are making huge progress!
Adley is the Moselle ambassador for the Telethon. Can you tell us about this young boy?
Adley so he is 10 years old he lives in Metz, he suffers from Duchenne muscular dystrophy so he will actually be the ambassador of the Telethon for the firefighters. He already came to Château-Salins at the beginning of November where he received the helmet from Colonel Boulanger and he will be present with us for the 2 days to get away from his daily life and be with the firefighters on the caravan of hope , the bike relay which will leave Phalsbourg Thursday morning to arrive in Maizières-lès-Metz next Friday
How can you make a donation?
There is always 36 37, the sound line which will be open from Friday evening. But from now on you can make a donation on Téléthon.fr, don't forget that it is 66% tax deductible.
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