Dad Roberto’s Challenge Continues: New Projects to Support Research on CMT2A

In recent years, we have often shared the story of Roberto Russo and his commitment to supporting research on Charcot-Marie-Tooth disease type 2A (CMT2A), the rare neurological disorder affecting his daughter Gaia. What began as a personal challenge has over time grown into something much bigger.

Thanks to numerous initiatives organized from 2018 to the present, Roberto has managed to raise over €115,000 to support the Mitofusin 2 research project at our Center, which aims to develop new therapeutic strategies for CMT2A. This is an important milestone, achieved step by step with the support of many people who decided to join him on this journey.

“Last year, I even received a letter from some supporters,” he recalls, reflecting on these years of dedication. “It was a surprise that really made me happy.” A simple gesture, yet for him it represented a tangible sign of solidarity and participation. Over time, Roberto has received messages of encouragement even from people living far away, including abroad, inspired by his tenacity and determination in sharing Gaia’s story and raising awareness about a condition that was almost unknown just a few years ago. These signs demonstrate how sharing one’s experience can become a source of strength not only for those directly affected but also for many other families facing similar challenges.

In the meantime, Gaia has grown up. She is now attending the Computer Engineering program at the University of Arezzo and is already beginning to explore future career opportunities and educational pathways.

She has many interests and projects, but—as is often the case for young people living with a rare disease—daily life presents challenges that go beyond clinical aspects, affecting the ability to build a future and fully engage socially. On this point, Roberto shares a reflection:
“Sometimes people focus on the object, the wheelchair, and all the limitations it entails. But if you stop there, you miss the person.”

A thought that reminds us of the importance of looking beyond appearances and difficulties, and of being more attentive and close to others. Because behind every fragility or limitation, there is always a person—with their story, dreams, desires, and the will to shape their future.

It is this awareness that continues to guide him in all his initiatives.

The next event will be the Subbiano Marathon, scheduled for May 3 in the town of Subbiano. The day will feature a run and a walk open to everyone, and part of the proceeds will be donated to the Mitofusin 2 research project at our Center. Special bibs will also be created for the occasion, featuring the Subbiano Marathon logo on one side and the Mitofusin 2 project logo on the other, to remind all participants of the significance of this run.

On September 10 at 8:30 PM, the “Dance for Gaia 3” charity event will take place. Now in its third edition, the event has previously involved many people through music, fun, and solidarity. It will once again be an opportunity to come together and support CMT2A research.

Thus, while science continues to seek new solutions for this rare disease, Roberto keeps doing his part, guided by the same spirit that has accompanied him from the start. When asked what drives him to keep going, his answer is simple:
“There’s no turning back; all we can do is look ahead.”

If you want to learn more about Roberto’s initiatives and participate in upcoming charity events, more information is available on his Facebook page, where he shares projects dedicated to Gaia and support for CMT2A research