Giving ALS a Voice: Andrea Caffo’s Story and His Commitment to Research

When Andrea Caffo talks about Amyotrophic Lateral Sclerosis (ALS), one word comes up often: awareness. Understanding a disease also means grasping its needs and creating the conditions for change to happen.

Andrea is 45 years old, lives in Catania with his wife Carmen and their children, Emanuele and Beatrice, and lives with ALS. It is an experience that has brought him face-to-face with the daily challenges that patients and families endure, prompting him to transform a personal need into a shared commitment. Today, he serves as president of the Post Fata Resurgo Association, founded to raise awareness about ALS, bring the needs of those living with it to the attention of institutions, and support scientific research.

Before his illness, Andrea worked as an executive in Milan. Then came the first signs: weakness in his left hand, loss of strength, and difficulty with everyday actions that had previously been automatic, such as buttoning a shirt or using cutlery.

“These were symptoms I wasn’t familiar with, and I never thought they could be linked to this disease,” he recalls. Thus began a series of in-depth neurological examinations and visits, culminating in the diagnosis of a motor neuron disease that progressed as ALS.

Amyotrophic Lateral Sclerosis is a progressive neurodegenerative disease affecting motor neurons—the nerve cells responsible for controlling muscles. As the disease advances, actions such as moving, speaking, swallowing, and breathing can become increasingly difficult.

“The disease knocked on the door and barged in, wiping away plans, ambitions, dreams, and prospects,” Andrea shares.

As the demands of the illness grew, he and Carmen decided to leave Milan and move back to Catania, their hometown, to rely on the support of their families. Andrea had to leave his job, and Carmen made the same choice to care for him full-time.

Their children navigate this day-to-day reality as well, but Andrea speaks of their “great fortitude” and an ingredient that is never lacking in the Caffo household: “We use a lot of humor to lighten the load.”

It was precisely out of this direct experience with the needs of people with ALS and their families that Post Fata Resurgo was born in 2021, with Andrea as its president.

“The association started almost out of necessity, because I couldn’t find all the answers I needed,” he explains. From that personal need grew an initiative centered first and foremost on information.

Post Fata Resurgo has organized events and seminars, including a session for medical students at the University of Catania that involved various healthcare professionals to introduce future doctors to the complexity of the disease and its clinical management. The association is also working on educational content to explain in plain language what ALS is and what it entails.

Andrea summarizes this vision concisely: “Awareness leads to action; action leads to change.”

And information turns into action. The association launched and backed a petition that gathered over 45,000 signatures, demanding qualified, uniform care across the country and greater investments in scientific research.

The petition’s core demands were brought to the attention of policymakers: presented at the Chamber of Deputies during a press conference and subsequently raised in parliamentary inquiries in the Senate, including one led by Senator Orfeo Mazzella.

At the heart of these efforts is a key request: to ensure that ALS secures a permanent place on the political agenda and that research can count on a dedicated national program, backed by targeted, structured, and long-term funding.

“For us, investment in scientific research is as vital as the air we breathe,” Andrea emphasizes. In his view, studying a complex condition like ALS requires a long-term perspective, adequate resources, and collaboration among different research groups.

“Italy has no shortage of talented researchers. What is lacking is investment.”

Andrea is also well acquainted with the work of Professor Stefania Corti, a neurologist and head of research at our Center, whom he met while living in Milan and whose scientific work on ALS he has followed over the years. This is why Post Fata Resurgo is currently supporting the project “Understanding ALS: A new research project using organoids and molecular mapping,” led by Professor Corti at the “Centro Dino Ferrari” ETS Association – University of Milan, Policlinico Hospital.

At the end of our conversation, Andrea shares an image to illustrate what he hopes to achieve: “I wish I had a megaphone so everyone could hear the plea for help from the ALS community.”

It is a megaphone he has already begun building. Through the association, educational outreach, dialogue with institutions, and support for research, Andrea is working to make that voice heard further and louder.

Because behind the need for new investments and new therapeutic avenues are real people and families waiting for answers—and a research community that needs continuity and support to keep searching for them.