She holds up a booklet from the AFM-Téléthon association, with the radiant expression of two adorable babies on the front page. Smiling twins, whose health concerns we cannot imagine. The angelic incarnation of the therapeutic progress made against rare diseases, via the Telethon.
Thanks to the laboratories created by the association, the spinal muscular atrophy of these two toddlers was able to be detected early enough to administer effective treatment.
“Today, we are saving lives that were condemned yesterday”rejoices Laurence Tiennot-Herment, president of the French association against myopathies, whose major media appeal for donations will take place on November 29 and 30, with the singer Mika as godfather.
Lives saved thanks to the sums collected over the past thirty-eight years of the Cathodic Telethon. But against the 7,000 rare diseases (mostly genetic) which “can affect anyone” and have already reached 3 million patients in France, the fight is still far from won.
A unanimous outpouring of generosity
“For 5% of patients, thanks to the research that we have financed, there are treatments. But 95% of cases remain in therapeutic and diagnostic wandering.”
All the more reason to remain mobilized, while the collection of donations gradually rises post-Covid.
In 2023, nearly 93 million euros (including 78 million euros in promises at the end of the TV show) have been raised for cures, but also for helping patients and financing clinical trials.
“We obviously hope to cross the 100 million euros mark even if we know that the economic context is difficultunderlines Laurence Tiennot-Hermont. The message to get across is that there is no such thing as a small donation, every cent of a euro is welcome and the victories obtained are those of everyone. Moreover, the majority are small donors, some of whom are not taxable.”
This shows the outpouring of generosity aroused by the Telethon, which will mobilize 15,000 municipalities on the ground for the 38th edition. Because beyond the numbers, there is a communion of heart for this cause, which is unquantifiable.
“Telethon time is also a celebration, a social and transgenerational bond. And then people know that our association, one of the most controlled in France, keeps its promises. Behind, there are parents with rage in their stomachs!”
Despite the tears, tears of joy…
She is unfortunately the leading figure, who experienced the tragedy of losing a son suffering from a rare disease.
“The death of a child is terrible, we never get over it, breathes this dignified lady whose eyes suddenly roared. My only son is no longer here but he gave me faith for this fight…”
A fight that bears fruit beyond myopathy because “the therapeutic progress observed also gives results for common diseases”.
Until the Telethon disappears, one day? “Ah, I would love so much… It seems utopian for the moment, because we have tackled a huge mountainmoderates Laurence. But when I meet children who would no longer be here without our action, it gives meaning to life. Before, we just cried. Today there are sometimes tears of joy.”
Related News :