Generosity Fuels Hope: Telethon Raises Nearly €80 Million for Rare Disease Research

A wave of generosity swept across France over the weekend as the 38th edition of Telethon culminate in a remarkable €79,801,520 raised to support groundbreaking research into rare diseases. This funding will provide critical support for 40 clinical trials tackling more than 30 different diseases.

“Behind this incredible sum lies so much hope for families waiting for treatments,” expressed a relieved Laurence Tiennot-Herment, president of AFM-Téléthon. She emphasized that these donations will empower the organization to identify new therapeutic solutions and transform the lives of individuals affected by rare diseases.

The marathon fundraising effort spanned weeks, but the pinnacle?

A 30-hour live broadcast on France Télévisions, brimming with moving stories, musical performances, and interactive segments. Thousands of events were held across the country, united by a shared determination to drive progress against often misunderstood and neglected diseases.

Donations continued to pour in even after the televised event concluded, with individuals encouraged to contribute online or via telephone until December 6th.
“It’s only through the undertaking of Telethon that we truly understand just how much effort goes into achieving such a remarkable sum… and it’s not even finished yet,” remarked another representative.

Targeting a Cure: New Hope for Duchenne Muscular Dystrophy

For the Telethon, this year holds special significance. Research advancements offer a glimmer of hope for those battling Duchenne muscular dystrophy, a debilitating genetic disorder previously considered incurable. This rare disease, which progressively destroys muscles and affects one in 3,000 boys in France, is deeply intertwined with the Telethon’s history. The disease was instrumental in the creation of the AFM (French Muscular Dystrophy Association) in 1958, which subsequently founded Telethon.

The ‘exceptional test’ for Duchenne muscular dystrophy is set to cost more than €30 million, a significant hurdle that the generous donations are now helping to surmount.

In

the 2023 edition, more than €93 million was collected in total.

Last year, the AFM dedicated around €60 million to researching and developing new therapies. The highest ever donation was in 2006, when Telethon raised over €106 million.

How⁢ does AFM-Téléthon plan to utilize ‌the €80 million raised in the 38th Téléthon?

## Generosity Fuels Hope: A Conversation with ‍AFM-Téléthon President

**Host:** ‍ Laurence Tiennot-Herment, president of‍ AFM-Téléthon, welcome to ​the show.

**Laurence Tiennot-Herment:** Thank you for having me.

**Host:** The 38th edition ‍of the​ Téléthon has just concluded, ⁤and⁢ the results are truly inspiring. ‌Nearly €80 million was raised ⁤this weekend! What does this incredible sum mean for AFM-Téléthon and‌ the⁢ families affected by rare diseases?

**Laurence Tiennot-Herment:** ⁣⁣ It means hope.⁤ Behind this⁢ incredible figure lies the unwavering hope of families waiting for treatments for their loved ones. This generous outpouring from the French people will ⁤allow​ us to ​fund 40 clinical trials targeting over 30 different diseases.

**Host:** Can you elaborate on ‍what kinds of​ research these funds will support?

**Laurence Tiennot-Herment:** These donations⁢ will fuel groundbreaking ⁤research into genetic neuromuscular ⁢disorders, the core focus of AFM-Téléthon. But⁢ it doesn’t stop there. We’ll also be‍ supporting research into other rare genetic diseases, pushing ‌the boundaries of scientific understanding and driving towards transformative therapies.

**Host:** This is the 38th‌ year of ​the Téléthon. How has the ‍event evolved over time, and what ⁢makes it so​ successful?

**Laurence‍ Tiennot-Herment:** The Téléthon​ has always been a remarkable display of⁤ solidarity. From its humble beginnings, it has grown into ​a ⁢national movement, uniting people ‍across France⁢ in support of ⁤a common cause. What makes it so successful is the unwavering commitment⁣ of⁢ volunteers, ‍the generosity of the French ​people,⁤ and the⁢ tireless work of researchers striving to improve the lives of⁢ those affected by ‌rare diseases. ​ [[1](https://fr.wikipedia.org/wiki/Téléthon_en_France)]

**Host:** Thank you so much for​ sharing your insights with ⁤us today, Madame ⁣Tiennot-Herment. This is truly a testament to ‌the power of⁢ human ⁢compassion and the hope⁤ that research can⁢ bring.

**Laurence Tiennot-Herment:** Thank you for having me. Every euro donated brings ⁣us ‍one step closer to⁤ a future where rare diseases are no longer a‍ barrier to a full and healthy life.