"Here, there is a natural commitment", Laurence Tiennot-Herment calls for mobilization for the Telethon<

She knows perfectly well the challenges expected for this 2021 edition. She is used to the pressure for this 30-hour solidarity marathon on public service. For 18 years, Laurence Tiennot-Herment has been president of the French Association against myopathies (AFM) and therefore in charge of the Telethon which will be launched on Friday December 3. She is making a stopover this evening at 7 p.m. at the Espace Center in Cagnes-sur-Mer in order to "meet, exchange with donors, volunteers, the general public to thank them for their mobilization." She also knows the territory perfectly. “In evoking the wonderful volunteers, I can only allude to Olivier Allo [he died Tuesday ⁽¹⁾ , Editor's note]. He was an outstanding organizer in Saint-Laurent-du-Var. A committed volunteer. This terrible announcement has saddened us a lot". On a daily basis, it mobilizes. Encourage. Impulses a force. Share his rage too. It is the fight of his life. His fierce struggle. She fought for her son who died in 2003, at the age of 20, from Duchenne muscular dystrophy. And, today, she fights, tirelessly, for all the others. The faces of his victories are many. Among them, that of Carla. A 2-year-old girl, suffering from spinal muscular atrophy ⁽²⁾ , who lives in Cannes and who benefited from the first gene therapy treatment. A treatment that was able to see the light of day within Genethon, the Telethon laboratory. Laurence Tiennot-Herment is fighting for many more victories.

A few days ago, you were in Brittany, then in Yvelines. Friday evening, you are in Cagnes-sur-Mer: why is it important to you to tour the regions each year before the launch of the Telethon?

It's important to meet volunteers who are extraordinary, motivated and committed. Thanking them is my priority! Going to meet donors, the general public. And then, it's also about explaining what we do with the money raised. To report on what we are going to do: the challenges, the issues. This year, these meetings have a special flavor since last year, due to the health crisis, I was unable to make these trips. So there is also this need to find oneself. These local meetings are a step up to the Telethon. A way to get into the mood for this ^35th edition. Last year, it was very complicated. We hope that everyone will be able to capitalize on the creativity, innovations and inventions that have been developed with the Covid crisis and confinement.

One of the consequences of the health crisis in 2020: donations were down compared to 2019 (2). What are the challenges this year?

Fundraising in the field represents – in a normal year – 40% of the final Telethon figure. Last year it was 7%. At the national level, land collection has been divided by three. On the other hand, donations on the Internet have increased by 25%. This somewhat compensated for the loss of land. The ambition for this edition, concerning the collection, is to try to return to the figures of 2019 and to maintain the development of the Internet. From any crisis, we can draw positives and there, even the most refractory to digital have mobilized.

A collection to continue the research?

This is our goal: to save lives, to cure incurable diseases, for some of which we have found innovative treatments. I am very proud to represent this association. Yesterday, children were condemned. Today, they live thanks to research that was born in the Telethon laboratories. A thousand researchers depend on the success of Telethon. Which is also a party, conviviality, social bond, and intergenerational.

A party with the support of personalities like Soprano, sponsor of this edition. A way to unite young people?

It is the artist who embodies this intergenerational bond. I saw him a few days ago and he is going to meet families at the beginning of November. If there is one thing that characterizes him, it is his generosity. He is also a very positive artist, who always tries to highlight the good side of things.

A philosophy that also sticks to the Telethon?

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Yes it's our DNA: building on the positive. Originally, the Telethon was born out of the suffering and death of children. So, we had to put ourselves in combat mode and say to ourselves “never again”. We managed to transcend all that into therapeutic successes.

The highlights?

On Saturday morning, there will be a live broadcast time from Marseille: we can well imagine why [Soprano is a Marseillais, Editor's note]. This year, the Telethon is on the theme of lights. So everything will be in this logic of luminosity. Highlight therapeutic advances, etc.

A specificity in our region?

It is a region – like many in France – which is very generous with a very important field telethon. Hence my coming to Cagnes-sur-Mer, too. There is a natural commitment and it is very impressive.

1. Read our Wednesday Metropolis edition.

2. A rare genetic disease that affects motor neurons.

2. The final collection of the 2020 edition of the Telethon amounts to 77.29 million euros against 87 million euros in total, in 2019.

Know +

This Friday at 7 p.m. at the Espace Center in Cagnes-sur-Mer, 5 avenue de Verdun. FREE ENTRANCE. Reservations recommended at: cbremond@afm-telethon.fr