Lto solidarity in the foreground. It’s called “Let’s make them grow up”. Telethon Foundation 2022 campaign to support research on rare genetic diseases. It starts on Sunday 11 on Rai Uno with Christmas and What special Telethon hosted by Carlo Conti and continues throughout the week with dedicated programming until 6pm in the evening. It will close with an episode of I Soliti Ignoti Special Telethon presented by Amadeus. meanwhile the11, 17 and 18, 3000 banquets in the Italian squares (the list is on the site) thanks to the volunteers, they will distribute Caffarel chocolate hearts; anyone can donate to receive one. Furthermore, until December 31st, it will also be possible to donate online or by telephone through the solidarity number 45510both from a landline and from a mobile phone. Let’s hope the numerator moves forward at speed.
Chiara Acchioni, 35 years old. She is a researcher at the Istituto Superiore di Sanità, she suffers from Stargardt’s disease, for which the Telethon Foundation has already financed 5 projects.
The Telethon Foundation campaign, now in its 33rd edition, is a well-established tradition. And the results were important. In recent years Telethon has invested over 623 million euros in research, financed 2804 projects with 1676 researchers involved and 589 diseases studied.
But much remains to be done, as evidenced by the story of Chiara Acchioni, 35, a researcher in the Department of Infectious Diseases of the Istituto Superiore di Sanità, suffering from Stargardt’s disease, which affects vision.
«I consider the disease part of me. I know that without it I would have been another person, different from who I am. And I like who I am» said Chiara. Born in Rieti, Chiara started having vision problems at the age of 10. In a short time the diagnosis arrived: Stargardt maculopathy, a degenerative disease of the retina, still without a cure, due to a genetic mutation. The only thing possible today is a therapy based on supplements that slow down the oxidative process. Today Chiara and her younger sister Marta, also affected by the same disease, are being treated by Professor Simonelli at Federico II in Naples, and hope, in the future, for a possible gene therapy, for which they have already been declared suitable.
The poster of the Telethon fundraising campaign “Let’s make them grow up”
Telethon Foundation: we also help Chiara and Marta
Meanwhile they dedicate themselves with passion to their work. Chiara, after a difficult adolescence, between vision problems and bullying by her classmates, she enrolled in Pharmacy at the University of Perugia, where she graduated at the right time: «When you grow up, it’s nice to see how friends and colleagues who get to know you well actually forget about the disease and they don’t see your diversity. They live you as if that problem did not exist and you see that your efforts have not been in vain », she said.
Today she is a researcher at the Department of Infectious Diseases of the Higher Institute of Health, she is an expert on HIV and she was chosen among the best Italian scientists under 40 in 2021 by Fortune Italia. «The university was not easy, nor the research doctorate, but my illness was also a motivation. Today, against all odds and thanks to the tenacity of my parents, I’m also doing an experimental job».
Her sister Marta, to whom Chiara is very close, today also works at the ISS, where she has just had a small contract. For Stargardt syndrome, 5 projects have already been funded and 4 researchers involved. To give hope to Chiara, Marta, and to many like them.
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