Telethon 2014: the fight of families in the spotlight

Interview with Laurence Tiennot-Herment, president of AFM-Téléthon

On the occasion of the Telethon 2014, Laurence Tiennot-Herment answers our questions.

The 28th edition of the Telethon will take place this weekend, what is the theme of the new campaign?

Laurence Tiennot-Herment: this new edition emphasizes on the daily struggle of families and children affected by a rare disease. This year, four ambassador families are in the spotlight, and through them, four rare diseases presented to the general public.

We will tell the story of Juliette, 2 years old, suffering from Fanconi anemia, rare disease characterized by a risk of acute leukemia and cancer 5 times greater than in a healthy person. This will be an opportunity to talk about the diagnosis and everything that happens before this announcement to the family.

You will discover Lubin, 7 years old, suffering from spinal muscular atrophy, debilitating and progressive neuromuscular disease which causes muscle atrophy. The AFM will explain in particular how the Telethon donations alleviate and support the daily difficulties of the family.

To Ilan, 3 years old, is something else again. He has Sanfilippo’s disease, a rare disease of the central nervous system. He could gradually lose walking, cleanliness and speech if left unchecked. In this specific case, so rare, gene therapy is the only solution. AFM helped research with a donation of 7 million euros, and for the first time, on October 15, 2013, Ilan was able to benefit from gene therapy treatment. This is the first gene therapy trial of its kind in a child.

Last but not least, Mouna, who is 25 now, has a rare vision disorder, Leber’s Amaurosis. His field of vision is very narrow. Telethon donations made it possible, once again, to finance the gene therapy trial in which Mouna participated at the Nantes University Hospital.

What is your assessment of the past year?

LTH : The results of the year are very positive. There are more and more trials in gene therapy in humans. Hope is real. In 2014, we will celebrate 15 years of successful gene therapy developed thanks to the Telethon. Dozens of children have been treated with this therapy, and they are doing well. It is also a great hope for medical research.

Almost 100 million euros are collected each year during the Telethon. How is this money actually used to help families?

LTH : First and foremost, the AFM Telethon makes it possible to fund and accelerate research and put a name on hundreds of rare diseases. The scientific advance is beneficial for the greatest number, as well for the genetic diseases as for the diseases in general. The annual budget devoted to helping and supporting patients and families is estimated at 35 million euros. In all, nearly 25 regional services have been opened and they depend directly on Telethon funds. Thanks to donations, it is possible to concretely finance certain needs of families such as a wheelchair or access for the disabled in everyday life.

Another important investment, the construction of two “Family Respite” villages in France, which allow family carers to breathe. In all, eight accommodations have been opened in Anger and 18 in the Jura. In Paris, the funds raised made it possible to open reception offices and telephone platforms.

What will be the events of this new edition?

TRIAL : This year, Garou is the sponsor of the operation organized in Paris, live from the Champs de Mars, and simultaneously on France Television TV channels and throughout France. Another major event, Friday December 5: The Grand Relais, from Méribel to the Eiffel Tower, champions of football, biathlon, Paralympic games… For each descent, 1 euro will be paid to the Telethon. Finally, live from the North of France this time, The Giants’ route will bring together a traveling caravan, France Télévisions cameras on board, which will leave Coudekerque-Branche in the North and which will arrive in Paris on Saturday 6 December at 18 p.m. The objective is to collect again the 30 million euros of donations as last year.