On Sunday, April 21, starting from Rotonda Diaz, there will be the Telethon Walk of Life, a running event open to all, resulting from the collaboration between Napoli Running and Telethon Foundation ETS and under the patronage of the City of Naples.
This is an appointment to mark on the calendar as unmissable because it combines the opportunity to spend a day dedicated to sport on the Neapolitan seafront and to reflect on the theme of the gift of health. In the spotlight, in fact, are the rare genetic diseases that the Telethon Foundation ETS has taken under its protective wing by collecting funds for their diagnosis and treatment.
Rare Genetic Diseases
These are serious, often lethal diseases, and in most cases, without available treatments. It is not easy to quantify the number of people affected by these diseases, both due to the difficulty in diagnosing them and because the definition is not the same worldwide. In Europe, a disease is defined as rare when it affects fewer than 50 people per 100,000, therefore it is estimated that between 3.5 and 5.9% of the population worldwide is affected.
Undiagnosed Diseases Program (UDP)
Despite numerous efforts by the medical-scientific community and advances in DNA analysis, there are still thousands of very rare genetic diseases with unknown causes that remain undiagnosable. For families with children affected by these diseases, the challenge is even more dramatic: the absence of a diagnosis implies not only deep emotional stress but also great uncertainty about how and how quickly the disease will evolve. Moreover, the unknown disease cannot be understood, nor can there be hope for any pharmacological or experimental treatments under development. For this reason, the Telethon Foundation launched, in 2016, the Undiagnosed Diseases Program (UDP), aimed at identifying the diagnosis in patients, predominantly in childhood, with genetically originated diseases not yet diagnosed.
The Telethon Institute of Genetics and Medicine (TIGEM)
The TIGEM was the first institute created by the Telethon Foundation in 1994 and its mission is to study the mechanisms of rare genetic diseases to develop innovative therapies. Tigem's work comes from 27 research groups that receive annual funding from the Telethon Foundation, granted based on a rigorous periodic evaluation carried out every five years by the Medical-Scientific Commission. Among other activities, TIGEM also manages research activities for undiagnosed diseases and coordinates a network of 19 clinical reference centers for medical genetics distributed throughout Italy.
11th Walk of Life Naples
The start from Rotonda Diaz at 9 a.m. on Sunday, April 21, 2024, to complete the competitive distance of 9.9 km Fidal or non-competitive distance of 3 km or 9.9 km, dedicated to families and all those children who face a rare disease every day. The proceeds of the event will support the scientific research projects of the Telethon Foundation ETS.
Registrations
Registrations are open online from Friday, March 8, until 11:59 p.m. on April 18, 2024, unless the maximum number is reached in advance, CLICK HERE. The registration fee is 15 euros for the competitive race and 10 euros for the non-competitive one. With registration, athletes are entitled to a race pack including gadgets and a running T-shirt. Info: walkoflife@telethon.it