Born in 1941, Daniel Tanesse suffered from the rare peripheral neuropathy called Charcot-Marie-Tooth (CMT type 2). Together with his wife Marina Brocca – also affected by CMT – he dedicated a great part of his lifetime to the associations and the people concerned by CMT. Having retired from his previous position as commercial manager for Air France, he used all his energy, experience, and visionary power for the benefit of CMT patients in France, Europe, and worldwide. In 1991, he joined the CMT France association as a Regional Delegate, then as Referent for Congresses (400 participants every year), and finally as Vice-President. He was also one of the founders of the European CMT Federation (ECMTF), from its registration until June 2024 its President, and finally its Honorary President, dedicated to uniting all European CMT associations, supporting them, improving the quality of life of people with CMT, and making them better represented and more powerful.
A decent man, with his leadership and vision, his empathy and discipline, his management capacities, fairness, and friendship, Daniel Tanesse brought together top-level scientists and clinicians, industrial leaders, and chairpersons of patient advocacy groups throughout Europe and beyond, to join their forces, raise awareness for CMT, and give new impetus to CMT research for the development of a cure to the various types of CMT. Upon his initiative, ECMTF organised the 1st European CMT Specialists Conference 2023 in Paris. With his support, the European CMT Research Association (ECRA) was created in 2024, and the 2nd European CMT Specialists Conference is taking place in October 2025. Daniel Tanesse was the heart of a great charitable movement that already reached thousands of members, gives hope to even more people affected with CMT, and encourages experienced as well as younger scientists from different disciplines to engage in cooperative research projects to effectively defeat CMT.
The board and all members of ECMTF, as well as the whole CMT community, deeply mourn the loss of Daniel Tanesse, a trailblazing advocate who dedicated his life to empowering those living with Charcot-Marie-Tooth disease. We extend our heartfelt condolences and thanks to Daniel’s wife, Marina, who patiently and devotedly accompanied him on his demanding journey and gave him strength and confidence in all challenges, and during his devastating illness, which finally took him away from us.
Dear Daniel, inspired by your extraordinary personality, friendship, and example as fellow and companion, we will honour your legacy by walking the path you helped pave together.
