Thank you from the bottom of our hearts to our donors, volunteers, and partners for their amazing loyalty and solidarity. Thank you for their precious generosity, which has given AFM-Telethon the means to multiply victories against the disease!
These victories already bear the names and faces of the families whom you discovered during the 2019 Telethon.
Hyacinthe, for instance, who suffers from spinal muscular atrophy and benefited from a gene therapy treatment just over a year ago. He was 10 months old at the time, was no longer able to hold his head up, and was losing movement in his legs, arms and hands… Today, like a “big boy”, Hyacinthe eats with a teaspoon, sits up without help and can push down on his legs! Such simple gestures, such indispensable gestures, but until then such unthinkable gestures for infants suffering from the most severe form of this disease. “Thanks to the treatment, we can envision a future for our son”, told us Mathilde and Cédric, his parents. It is to regain this strength, synonym with life, that the Telethon has united parents, patients, researchers, donor, volunteers and partners for more than thirty years.
This victory was achieved after many struggles, from the discovery of the gene responsible for this disease to the research carried out in our Genethon laboratory! It is one of the results of a medical revolution that accelerates with the growing number of innovative treatments. Thanks to your exceptional mobilization, new clinical trials should start and ten or so others should develop further in our laboratories in 2020. All the projects we undertake, all the research we fund through the Telethon, are as many hopes for the families who await for treatment.
We know it now: overcoming disease is possible. Together, we can give children, and patients, the strength to heal!