History of the Telethon

Bernard Barataud, then chairman of AFM-Telethon, and Pierre Birambeau, Director of Development, both fathers of boys suffering from Duchenne muscular dystrophy, were responsible for creating the Telethon in France.  

At the request of Bernard Barataud, and with approval from AFM-Telethon’s Board of Trustees, Pierre Birambeau went to the USA with his family in 1986. Why? To study the American Telethon, a charity TV marathon presented by the comic Jerry Lewis since 1966.  

Convinced that the Telethon was the solution to bring rare diseases out of obscurity and secure the means to fight them, the two fathers suggested that the Association bring the American concept to France and organize a French Telethon. 

“When we know where we’re going we need to use resources to get there, and there are considerable resources available for genetic research, nothing like the small amounts previously allocated to researchers every year.” Pierre Birambeau 

Together they managed to convince the leadership of the TV channel Antenne 2 (now named France 2) to adapt the program for French TV.  

On December 4, 1987, at 8:30 pm, the theme tune for the Telethon was heard for the first time on TV, on Antenne 2. Live from the studios of Radio France, Michel Drucker, Claude Sérillon, Gérard Holtz and Jacques Chancel took turns on set for 28 hours non-stop, with Jerry Lewis as sponsor. It was the longest program ever produced in France!  

All the ingredients for the Telethon were there: exploits, testimony from families and researchers, and exceptional participation of the teams from Antenne 2, partners, volunteers, a sponsor, artists and celebrities to support the fight of the families, and the famous 3637, the pledge phone number.   

The program was a resounding success. Over 175 million French francs (29.7 million euros) were raised, three times the amount expected. Since the counter had only eight figures, a ninth handwritten panel had to be added!   

Challenges on common themes, participation by ambassador towns, volunteer feats... the Telethon got French people involved, in all the towns and villages of France and elsewhere, in the fight alongside patients and their families.  Slackline crossings, sports challenges, participation of 100 towns and villages, knitting of a 3km-long scarf, baking of the world’s longest tart and thousands of crepes, a climb up a 3,637 m peak and hot air balloon rides...

The American comic Jerry Lewis was the sponsor of the first Telethon, in 1987. Since then, each year a new personality lends their support to the Telethon by becoming its sponsor. Its aim is to bring the cause of rare diseases into the spotlight, and help raise the counter as high as possible.  

Over the years a number of personalities have sponsored the Telethon: Soprano, Matt Pokora, Jean-Paul Rouve, Pascal Obispo, Zazie, Marc Lavoine, Garou, Patrick Bruel, Franck Dubosc, Gad Elmaleh, Anne Roumanoff, Daniel Auteuil, Gérard Jugnot, Thierry Lhermitte, Yannick Noah, Pierre Perret, Alain Delon…   

Since the first Telethon in 1987, the generosity of French people has not wavered. Each year they bring their support to the fight against disease. From year to year, their generosity enables AFM-Telethon to further research, to improve the care pathway for patients and offer them support locally at all stages of the disease, through the healthcare pathway advisers.  It also helps with recognition of rare diseases and the emergency of innovative therapies for these diseases long considered incurable.  

The 2021 Telethon raised €85,933,166.

For more information on the use of donations, read: the Cure through innovation booklet

Read : Our victories against the disease