2021-11-28 17:00:00
Since 1958the French Association once morest myopathies (AFM) fights to make known the neuromuscular diseasesand more generally the rare diseases. We identify between 6,000 and 8,000 most of which are ultra-rare, serious, disabling and life-threatening from childhood (in half of the cases, they concern children under 5 years old). They affect more than 3 million people in France and 30,000 new cases are diagnosed each year in France.
Telethon 2023 France: what date? godfather ? events?
The 37th edition of the Telethon will take place December 8 and 9, 2023. This year, it’s the singer and songwriter Vianney who sponsors the edition.
I intend to do everything I can to shine a light on these parents and children who struggle every day, and to support the researchers who are doing amazing work. I sincerely expect great encounters and learning during visits to the Généthon laboratories. Vianney
Several families affected by these illnesses will be the 2023 ambassadors. Four stories that embody the victories already won by the Telethon and the new challenges to take on. Thus, Ibrahima, 2 years old, suffers from spinal muscular atrophy who walks like all children his age thanks to a gene therapy drug.
???? Léon, 9 years old: “If I become stronger than my illness, it will be thanks to you”
Suffering from giant axon neuropathy, a degenerative disease, he gradually loses his movements. For him, there is an urgent need to find a treatment.
His story ???? https://t.co/W855ysyKTvpic.twitter.com/oC4HCkwJ0j
— AFM-Téléthon (@Telethon_France) September 13, 2023
What events are being organized this year?
Village meals, sales, raffles, races, hikes… everywhere in France more than 20,000 animations take place every year for the Telethon. Find the map of events organized near you!
Without forgetting the traditional Telethon broadcast, a 30-hour television marathon from December 2 to 3. On the program: testimonials from patients, their families and researchers, shows, draw for the big raffle… Four cities are at the heart of this national system:
- Caudebec-lès-Elbeuf (76),
- Gujan-Mestras (33),
- Clermont-L’Hérault (34),
- et Morestel (38).
All the information on the Telethon website.
What is the goal of the Telethon? what medical advances thanks to the Telethon?
To finance research and improve the daily lives of patients and their loved ones, the AFM organizes the first Telethon in 1987. “Genetic diseases were destroying the lives of our children and our families. To fight them, we had nothing: no means, no treatments. We wanted to bring to life research that did not exist. We wanted revolutionize medicine“, explains Laurence Tiennot-Herment, president of the AFM-Téléthon (source 1).
The charity event allows the association to raise funds pour :
- help researchers launch new therapeutic trials;
- participate in the acquisition of advanced technologies in laboratories;
- but also improve the care and life of patients.
What diseases are affected?
Pathologies of the muscles, blood, brain… 80% of rare diseases have a genetic origin. Et 95% of them are still incurable. Clinical trials financed by Telethon donations concern rare diseases as :
Medical advances, clinical trials… What has changed thanks to the Telethon?
Thanks to donations, the AFM-Téléthon was able to create:
- two research laboratories dedicated to gene and cell therapies : Genethonin 1990 (one of the world leaders in gene therapy) and I-Stemin 2005 (the largest French research laboratory on stem cells and cell therapy for monogenic diseases);
- l’Institute of Myologyin 1996 (the only European reference center on muscle and its diseases) and the Scientific interest group (GIS)-Rare Disease Institute, in 2002, which coordinates, stimulates and develops research on rare diseases;
- fourteen DNA bankscollected from patients and their families.
The AFM-Telethon supports 41 human trials for 32 different diseases. Technological advances in genome analysis have made it possible to identify 4,500 genes responsible for genetic diseasesand therefore better diagnose these rare diseases.
Year following year, thanks to incredible popular enthusiasm, thanks to the generosity and loyalty of all, a scientific and medical revolution is born, which has changed the lives of patients affected by rare diseases long considered incurable. And, for many patients awaiting treatment, the Telethon can still change everything (AFM-Telethon)
Here are some examples of medical advances made possible thanks to the Telethon (source 3):
- and gene therapy treatment for spinal muscular atrophy, resulting from research by the Généthon laboratory. More than 2,000 babies have been treated worldwide with this drug since 2019. The majority of affected children die before the age of 2, although they can now grow without respiratory assistance. A pilot project is launched in 2022 to develop genetic screening for this disease at birth;
- of the drugs to treat Wilson’s disease, β-thalassemia, Leberou optic neuropathy and X-linked severe combined immunodeficiency;
- numerous clinical trials are underway, notably once morest multiple sclerosis, sickle cell anemia, Duchenne disease, myotubular myopathy, etc.
Telethon 2022: Kev Adams sponsor, what amount raised thanks to donations?
The 36th edition of the Telethon which took place on December 2 and 3, 2022 made it possible to raise 78 051 091 €..
In detail, thanks to donations collected in 2022:
- 37.6 million euros were dedicated to helping the sick ;
- 56.2 million euros for the “Heal” mission (research and development of therapeutics).
In 2021, it is the Soprano singer who had decided to support the fight of the AFM-Téléthon. He succeeded Matt Pokora, sponsor of the 2020 edition. But also many personalities: Jean-Paul Rouve (2019), Pascal Obispo (2018), Zazie (2017), Garou (2016), Marc Lavoine (2015) , Garou (2014), Patrick Bruel (2013), Franck Dubosc (2012), Gad Elmaleh (2011), Anne Roumanoff (2010), Daniel Auteuil (2009), Julien Clerc (2008), etc.
Telephone number, online… how to donate to the AFM-Téléthon?
You can make a donation for the 2023 edition:
- par telephone, at 36 37 (toll-free number, free call from a landline)
- par SMS by sending “DON” to 92007 (fixed amount of €5 taken directly from your mobile operator bill)
- par Internet (accessible from your computer, tablet and mobile)
- on site of twenty thousand events which will take place in 10,000 municipalities in France
- par Postal routeat the address AFM Téléthon – BP 83637 – 16954 Angoulême Cedex 9
You can also create a online donation collection pot (see how on the Telethon website). Last year, the fundraising pages raised more than 1 million euros.
66% of the amount of donations made to the AFM-Téléthon is tax deductible, up to 20% of taxable income. For example, if you donate 100 euros, you will only pay 34 euros thanks to tax reductions. The AFM accounts are made public each year. They are accessible on the association’s website. Since 2000, a direct telephone line has also been dedicated to donors for any individual questions: 0825 07 90 95 (€0.15 including tax per minute).
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