Between music, sports, and solidarity: Roberto Russo’s new initiatives for CMT2A research

Who knows Roberto Russo knows he’s a whirlwind of ideas. For those who don’t know him yet, a brief introduction: Roberto lives in a town in the province of Arezzo, is married to Simona, and has two daughters, Noemi and Gaia. It is precisely for Gaia, who was diagnosed a few years ago with a rare disease, Charcot-Marie-Tooth type 2A (CMT2A), that he decided to take action personally to support research and raise awareness about this condition. From 2018 to today, thanks to his enthusiasm and his ability to involve more and more people, he has managed to raise over €100,000 in support of the Mitofusin 2 project at our Center (click here to read his full story).

Yet, at the beginning of this year, he thought about taking a break, he tells us during the interview.

After all, with a full-time job, a family to care for – a wife, two daughters, and even a dog – it’s not easy to juggle other commitments, especially when organizing events and initiatives that require time, energy, and a lot of determination. Added to this is the emotional weight of a disease that poses new challenges and uncertainties for the future every day.

From the outside, it’s often invisible, but behind a life like his, there’s an enormous amount of work, made of love, strength, and sacrifice. Days spent balancing daily responsibilities and unforeseen events, investing energy to ensure Gaia the best possible future, without ever losing sight of the hope that research could take new steps forward.

The truth, however, is that stopping isn’t for him. And so, as always, he set off again, more determined than ever. Today, together with new supporters, he already has two major initiatives underway.

The first will take place on March 9 and will be an evening of music, poetry, and solidarity. Above all, it will demonstrate how connections between people can transform into something truly special.

It all started almost by chance, thanks to an initiative by the Corriere di Arezzo, which every year awards prominent figures in the area with the title of “Aretino of the Year.” Among the candidates this year were Roberto, who came in second, and Andrea Bindi, a firefighter by profession and poet by passion, who took first place.

Andrea and Roberto crossed paths during this event. Moved by Roberto’s battle, Andrea decided to do something concrete to help: so, in the context of the presentation of his new book, Inquieto Vivere, he transformed the event into an opportunity to raise funds for CMT2A research and to raise awareness of the impact of rare diseases on patients and their families.

During the evening, Roberto will share his experience, talking about the Mitofusin 2 project and the importance of research for those who, like Gaia, face the daily challenges of a still-incurable disease. And this won’t be the only occasion: on April 3, during the official Aretino of the Year award ceremony, Roberto will present his testimony to the public at the Municipality of Arezzo, continuing to raise awareness about this disease and the importance of investing in scientific research.

The second initiative will have the rhythm of running and the taste of an achievement worth much more than a medal. On May 22 and 23, Roberto, together with athlete and friend Alessandro Dellalunga, will undertake a special feat: the 100 km for Gaia.

Alessandro, who has previously promoted charity runs for Gaia, this time decided to dedicate an even bigger initiative to her: his participation in the historic 100 km del Passatore, an ultramarathon connecting Florence to Faenza, one of the most fascinating and demanding races in the Italian sports scene.

To give this feat an even deeper meaning and transform it into an opportunity for solidarity, Roberto created a special gadget that anyone can purchase to support research, whether participants in the race or remote supporters. It is a small wooden block, symbolizing strength and endurance, that holds a number from 1 to 100, symbolically representing one of the kilometers of the race.

Accompanying the gadget is the indispensable “Omino del Selfie”, the lucky charm that has accompanied Roberto in his charitable initiatives for years.

How to get it?

• Residents in Arezzo can contact Roberto directly: robbierusso@virgilio.it
• Those farther away can receive a virtual version by writing to info@centrodinoferrari.com and making an online donation

All funds raised will be entirely dedicated to scientific research at our Center.

Thus, every kilometer completed will not only be a sports milestone but also one step closer to the hope of a cure for Gaia and for all those living with Charcot-Marie-Tooth 2A.