My France is joining the Telethon which opens this Friday with its President Laurence Tiennot-Herment who comes to tell us about the fight of families and researchers who make progress on therapies year after year. Mika the godfather is mobilizing and putting his notoriety to the benefit of this great cause.
The Telethon has just launched for two days of donations, with its 250,000 volunteers ready to carry out activities throughout the country.
Laurence Tiennot-Herment, President of the French Association against Myopathies, is mobilizing again this year to raise as much money as possible, the nerve of the war and the driving force behind all research. “The word impossible no longer exists with these extraordinary advances” in gene therapy. Tears of joy replace those of sadness, not yet often enough, of course, but sometimes nonetheless.
“Our twins were born in the right place and at the right time. We want gene therapy! May all families throughout France benefit from the same opportunity as us! » rejoices Mégane, mother of Marley and Mylane, one-year-old twins suffering from spinal muscular atrophy who were able to miraculously benefit from gene therapy at birth, because they were born in a hospital which screened for this disease. Unfortunately, this is not the case for all maternity wards.
Also note certain major advances obtained for two of the most emblematic diseases of the Telethon: Duchenne muscular dystrophy and spinal muscular atrophy.
Little Sacha, eight years old, one of the ambassadors of this edition, suffers from the first. 2 years ago, he benefited from a clinical trial with a treatment developed by the Téléthon laboratory: “At the time, he had difficulty climbing the stairs, he fell easily”, now, he climbs the stairs fluent ! It is indistinguishable from a child who does not have the disease. It was completely unexpected a few years ago.”
“In 1987, during the first Telethon, we did not even know the genes responsible for diseases. Today, we are accumulating results” recalls Laurence Tiennot-Herment, President of the French Association against Myopathies.
The Marathon has started, the Singer MIKA joins in and will closely monitor the donations and promises! With 30 hours of airtime for the telethon, events throughout France to raise funds.
Last year, 37 million euros were dedicated to helping patients, 53 million went directly to research and 38 clinical trials were launched, we can bet that the 2024 edition will surpass all records!
Telethon Donations
France
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