Telethon 2025 shall be hung on December 5 and six, 2025. Born due to the resolution of oldsters of youngsters suffering from myopathy, the affiliation has controlled to change into the torment of the illness right into a producing drive for mutual help, medical development and social innovation. A glance again on the causes for this good fortune, within the mild of empowerment theories.
When the French Affiliation of Myopathy (AFM) was once created in 1958, scientists and docs had little or no wisdom in regards to the illness. With the improve of a number of oldsters of sufferers, its founder Jolaine de Keper, who herself is a mom of 4 youngsters affected by Duchenne muscular dystrophy, does now not settle for destiny.
She determined to create a construction to lift consciousness (and popularity) of this illness, with the ambition of sooner or later with the ability to treatment the victims, maximum of whom died ahead of maturity. The statutes firstly registered within the Legit Gazette then specified that the aim of the AFM was once “() the list of myopaths in France and Belgium, () obtaining for patients suffering from myopathy the benefits of a “long-lasting” diet; () creation of a specialized social and medical center”.
Rather less than seventy years later, after changing into the French Affiliation in opposition to myopathies after which the AFM-Telethon, this construction is a key participant in biomedical analysis, whose affect and experience transcend its unique scope.
A cross-analysis of the affiliation’s institutional stories in addition to medical or civil society publications lets in us to raised know the way this good fortune was once constructed, due to collective empowerment.
From the rise up of households to the beginning of a motion
On its site, AFM-Telethon boasts a community of 68 delegations that depend on greater than 850 volunteers to improve sufferers and their family members on a daily basis.
Refusal of destiny, harmony, seek for answers are the elemental values of this collective. Contributors of AFM oldsters pop out of isolation, assist each and every different and percentage their studies. Over the years, casual conferences was extra structured; The affiliation now has important reception and data assets: chat groups, helplines, boards, and so forth.
The collection of households going through the similar issues enabled the elevating of consciousness, shared id, bonds of harmony, collective wisdom and gear, providing a concrete representation of neighborhood empowerment. This time period empowerment is hard to translate into French, as a result of there may be actually no an identical that might repair each its person size and its collective, evolving and transformative dynamics (although makes an attempt had been made, similar to “empowerment”, “power of action” or “disability”, particularly).
When sufferers transform analysis companions
Within the early Eighties, AFM discovered that assist isn’t sufficient: we should search to heal ourselves. In 1981, he established his first medical council, laying the principles of an alliance between households, researchers and docs. In 1982, below the presidency of Bernard Barataud, it followed the bold motto: “Reject, resist, heal”.
However to succeed in this objective, the affiliation wishes cash, some huge cash. In 1987, impressed via the Jerry Lewis display, the AFM introduced the Telethon with France 2. A thirty-hour marathon of are living announces that mobilized all of the nation: 180 million francs (an identical to 27 million euros) had been raised from the primary version. It is a historic turning level – civil society turns into a co-actor in clinical analysis.
The affiliation invests in laboratories and institutes (see the desk under) and nice medical discoveries observe one after every other:
In its 2024 annual and fiscal document, the affiliation lists greater than 40 scientific trials underway or in preparation for 33 other illnesses (muscle, pores and skin, center, imaginative and prescient, liver, and so forth.).
This context allowed Laurence Tiennot-Herment, President of the AFM, to state all the way through the 2024 Telethon:
“Today we have concrete results. It is a collective medical revolution.”
Fortify as with regards to circle of relatives as imaginable
Along with medical development, the affiliation continues its mobilization to improve sufferers of their day by day lives via designing a community nearer to households. AFM-Telethon has 120 well being advisors who paintings now not simplest at house, but in addition in class and within the place of job, to improve each and every level of the existence adventure: analysis, schooling, employment, administrative procedures.
Vectors of person empowerment, those pros advertise the expression of wishes, the fulfillment of autonomy and the development of existence initiatives tailored to each and every state of affairs. Their adapted improve is helping other folks notice their rights, give a boost to their capability to behave and transform energetic individuals of their adventure.
Those programs put the folks involved on the center of the choices that have an effect on them. Passion teams also are shaped via pathology (Duchenne and Becker myopathies, Spinal muscular atrophy, Myasthenia, Steinert myotonic dystrophy, Facio-scapulo-humeral dystrophy, Undiagnosed neuromuscular illnesses, Inflammatory myopathies, Girdle myopathies). They bring about in combination individuals who have evolved in-depth experience of their illness. In combination, they mobilize their collective intelligence for the joint manufacturing of data and the improvement of well being sectors and analysis.
Mobilizing its power and assets round two complementary methods, AFM-Telethon due to this fact puts its movements inside the framework of large-scale joint empowerment: a systematic axis, involving households within the manufacturing of elementary wisdom and the improvement of experimental methods, and a social axis, in line with the improve of autonomy with the average design of the “phone line – fami0000”. 35 36 37 – to be had 7 days per week and 24 hours an afternoon, developing a spot for respite) and native improve programs (house visits via the aforementioned well being trail officer, mental improve unit all the way through the pandemic).
From science to society
AFM-Teleton has an bold and proactive imaginative and prescient of well being. His advocacy conjures up nationwide plans on uncommon illnesses and promotes streamlined, higher funded and innovation-oriented analysis.
Thus, the neonatal screening program now features a program for childish spinal muscular atrophy (SMA) in newborns. It is a nationwide extension of the Depisma venture led via AFM-Telethon (the Depisma venture, a pilot venture for genetic screening at beginning, was once deployed via AFM-Telethon within the Nouvelle-Aquitaine and Grand-Est areas; introduced in January 2023, it enabled the detection and remedy of the illness in 4 small children).
However his affect is going past the sphere of well being: his thirty hours at the air and 1000’s of occasions arranged in additional than 15,000 municipalities aren’t simply fundraising time: they’re a lever for social transformation. Through offering a platform for sufferers and their family members, the affiliation has made visual those that had been stored at a distance via society.
The affiliation is a part of a convention of motion serious about harmony, improve for households and improve for analysis, averting any partisan place. This strategic orientation lets in it to pay attention its assets on its dedication to ship effects (saving youngsters’s lives).
Additionally, it places its medical and organizational experience on the carrier of alternative associations, particularly for the improvement of biomarkers, structuring the field or responding to requires proposals. The instance of the AFM-Telethon illustrates the best way by which a significant actor can give a contribution to the strengthening of collective empowerment, with out essentially making an investment in a political sign up within the strict sense as different actions have selected.
Empowering sufferers. Delicate revolution in well being, Presses de l’EHESP, October 2025. DR
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