Charity marathon takes over screens
France digs deep to support Téléthon fundraiser that brought in €92.9m last year for rare disease research
COLLECTION boxes will be rattling across the country this weekend for the 29th Téléthon, a marathon charity fundraiser that last year raised €92.9million.
The mammoth event takes over France Télévisions programming tonight and tomorrow but starts at a disadvantage this year with many changes forced by the state of emergency.
A planned live TV broadcast of the main event from the Champ-de-Mars in Paris has been switched to the more secure Longchamp racecourse in the Bois de Boulogne but many more street events have had to be cancelled – and they usually make up 40% of the funds raised.
With donations earning a 66% tax exemption it is a remarkable fundraiser that has boosted research into rare diseases, particularly muscular dystrophy, and even launched France’s first not-for-profit drugs manufacturer.
Two years ago Généthon Bioprod, the laboratory arm of the charity Association Française Contre les Myopathies, was given the go-ahead to produce drugs by the Agence Nationale de Sécurité du Médicament – with the medicines being priced at little more than the cost of production, with profits being reinvested.
AFM-Téléthon has several laboratory branches that investigate genetic treatments and stem-cell research and two years ago opened its own €24m laboratory in Essonne.
Last month research funding for another researcher, I-Stem, saw the announcement of clinical trials of treatments for rare genetic disorders affecting the eye and the skin plus Huntington’s neurodegenerative disease.
The #Telethon2015 is today/ tomo in support of the #raredisease community https://t.co/k6M2XHcMIJ @Telethon_France pic.twitter.com/3fYBYpF2Wj— Rare Diseases Europe (@eurordis) December 4, 2015
With audiences of up to 20m people – and live televised events from Avignon (Vaucluse), Beauvais (Oise), Maussane-les-Alpilles (Bouches-du-Rhône), Roanne (Loire), Saint-Etienne (Loire) and Saint-Valery-en-Caux (Seine-Maritime) – organisers still hope to beat last year’s €92.9m and the record €107m raised in 2006.
Donors can call the donation phone hotline on 3637 from this morning and their efforts are tax-deductible at 66%. A donation of €75 will cost just €25.50 to French tax payers after the tax exemption.
For every €100 raised €81 goes for social work – research, treatments, direct help - €11.5 covers collection expenses and €7.5 for administration.
