Fabrizio Malta, President and founder of the Italian Kennedy’s Disease Association (AIMAK) is worried. He’s worried, he tells me, that sufferers of Kennedy disease do not make an effort to make their lives easier. Many of them don’t believe there will ever be a cure for them, and, as a result, they spend a lot of time indoors and they go out less and less because they have too much trouble walking.
However, there are solutions. There are wheelchairs, electric scooters, and a new Italian product for walking has just reached the market that can help people who have problems with walking.
“I was skeptical myself, at first,” Fabrizio says about ExoBand. “But when I tried it, I realized that it worked well. It can really help Kennedy’s sufferers walk for longer distances but I don’t think the other Kennedy people get it.”
Walking long distances is something that can’t be taken for granted by people with the genetically inherited motor neuron disease. The disease that affects males usually between the ages of twenty and fifty leads to a progressive weakening of muscles throughout the body. Currently, there’s no known cure, so treatment focuses on making life more comfortable for Kennedy’s sufferers. The ExoBand is just one solution, along with wheel chairs and other walking aid equipment. Fabrizio tells me that he used to love walking in the mountains as a younger man but because the disease has progressively weakened the muscles in his legs, he now relies on his Jeep to get him around the surrounding mountains near his birthplace in Rome — something he loves to do at weekends with his family.
Yet not everyone has Fabrizio’s desire to fight the limitations caused by the disease. Fabrizio explains:
“The problem is that a lot of people with Kennedy’s in Italy don’t want to be seen using the walking aids because they’re embarrassed about their condition. I try to persuade them that using this equipment can help us live more comfortably but it’s like they don’t want to know. Sometimes it feels like what I’m doing [as President of the association] is just an uphill battle. But I persevere, hoping that slowly I can persuade people that we might be slow and weakened in some ways but we have to live our lives not hide away.”
Slow but not hiding away is something of a parallel theme in The Great Road Trip, a Kennedy’s disease charity event that is raising awareness as well as much-needed funds for research into the disease. Since April 19, the retro car road trip in refurbished Citroen 2CVs has been slowly but surely making its way from Los Angeles and will arrive in Rome for the grand finale on July 23. The iconic 2CV, to aficionados the ‘tin snail’, has a huge cult following, something similar to that of the Fiat 500. In its heyday, Citroen’s famously slow but resilient hero would hit its top speed of 65 km per hour in around 45 seconds leading the scorners of the vehicle back in the 80s to joke it would go from zero to sixty in less than a day.
I spoke to Fabrizio Malta to find out more about the Great Road Trip that has inspired enthusiasts across the world to polish up their 2CVs and support those with Kennedy’s in the fight against the disease. Here he talks about raising awareness for Kennedy’s, the dangers of breaking bones, and what needs to be done for disabled people around Italy.
So, Fabrizio, what’s The Great Road Trip all about?
Well, first thank you for this opportunity to talk about this very important initiative. The Great Road Trip is really an epic journey between two continents — from Los Angeles to Rome — with the aim being to raise awareness of Kennedy’s disease and raise funds for scientific research.
And what was the idea behind traveling in refurbished Citroen 2CVs?
I guess, we could have chosen a modern, fast and reliable car. But living with Kennedy’s disease doesn’t mean being fit, fast, and strong. We are so like the Citroen 2CV — the so-called tin snail. Our body struggles to do everything, and our daily life is very tiring. But we don’t give up. If a vintage Citroen 2CV manages to travel across two continents, we want to show that nothing is impossible in life.
You’re the President and founder of the Italian Association for Kennedy’s disease. Can you tell us something about the work the Italian association is currently doing?
Our association started up in November 2019, just before the pandemic. But we didn’t let that get us down. So, we got to work and created the first Scientific Committee for Kennedy’s that is made up of important doctors and researchers who dedicate their efforts to seeking a cure and following Kennedy patients.
We hold annual conferences to inform patients about the latest research and we’ve opened drop-ins including psychological support for patients and caregivers and physiotherapy consultations. We’ve launched a new webinar format called “What a Pleasure to See You” so every three months we organize a webinar to meet, get together, and talk. Then we’ve also created a webinar that we organize called “The Experts at Our Side,” in which we cover various topics dedicated to Kennedy patients. Our webinars are led by professionals from across many disciplines.
And from just last week, we have a new project: Commit to Raise Funds for Research because our doctors need funds to continue to help us. For more information about our association, you can visit our website.
I understand that Italy is currently making some notable progress towards finding a cure for Kennedy’s disease. Can you explain a little about that?
Yes, so luckily Italy is one of a few countries where the study of this disease is at a good level. The mechanisms of the way the disease works have been clearly understood and several pre-clinical in vitro studies are underway. So there is hope for the future.
But, naturally, the way forward is not easy. We hope that new clinical trials on humans can soon be carried out and we stand by our doctors. Not just in Italy, but all the doctors in the world who are studying Kennedy’s disease. In fact, our Association constantly dialogues with both the American and UK associations with whom we have excellent relationships. And I’ll be meeting them in Rome when The Great Road Trip gets here on July 23rd.
What are some of the biggest challenges then around living with and managing the disease?
Everyday life is a challenge for us. Kennedy’s disease is neurodegenerative and affects all muscles in the body. Initially, it begins with general weakness and difficulty in walking, then over the years it becomes increasingly difficult to do practically everything until you have to accept that to get around you have to use a wheelchair.
In every moment of life, unfortunately, this takes away the chance of doing lots of things. We struggle to take even a simple step or get up from a chair. I’ll give you an example. Up until five years ago, I was walking with a stick. Today I can take a few steps and then I have to use the wheelchair. People living with Kennedy’s disease are mainly at risk of falling and breaking their bones and have difficulty even swallowing food, so these things are obviously very dangerous.
The Great Road Trip is passing through the US, starting in LA, then driving through London, Paris, with the final leg of the trip arriving in Rome. Have you ever been to any of these places yourself?
Sure. I’ve visited New York twice, London twice, and Paris once. They’re three very different cities but all with an incredible charm. Each of them is full of a rich array of culture, art, food, fashion, and music.
I was just a teenager when I first went to New York and I remember walking up 5th Avenue. In Paris I really like the area around Sacré-Coeur in Montmartre and I remember going to Carnaby street in London and I loved listening to live music in the pubs. Each of these three cities has a lot to offer. I also spent time in Texas as a teenager when my dad worked over there for a few months. I found the way of life there really different compared to Italy, but these are all trips I’ll never forget.
And for those people coming to Rome with The Great Road Trip, what can they look forward to?
Well, Rome has a lot to see and plenty to do. It is the eternal city, after all. In Rome you live and breathe culture, history, charm, good food, and the joy of walking around the many museums, restaurants, ancient villas, and the Roman ruins are always ready to be admired.
To celebrate The Great Road Trip, we have chosen a tourist destination famous for all Romans. The famous Castelli Romani located 20 minutes by car from Rome. Many people spend their holidays here and they can enjoy great food, history, culture, enchanting villages, and natural beauty. There are also two beautiful volcanic lakes. In fact, we will have the charity lunch in a restaurant located on the Lake of Castel Gandolfo. Borgo Castel Gandolfo has been named one of the most beautiful villages in Italy and it’s possible to visit the Pope’s summer residence.
What would you say Rome and, indeed, Italy needs to make it easier for disabled people to get around?
This is a good question. And I can tell you this. In Italy there is definitely a need for improvement in growing a culture of equality and equal opportunities, empathy for people with different abilities, and the ability to put oneself in the other’s shoes as a step towards understanding what others might need.
In Italy, there is also need to break down architectural barriers. We need more cycle paths and I think we should eliminate steps that limit our access to the shops, and public transportation also needs to be more accessible. In short, inclusiveness should be at the heart of every town planning and infrastructural project. I think that the greatness of any nation and its people is measured by the attention shown towards the most fragile people in its population.
You’ve spent time in the US, so you know the culture is very different there compared to Italy. Do you think that in Italy the culture has an impact on the way people deal with the disease?
It is not easy to answer this question but, from what I have seen, I think that people in the US with disabilities have fewer problems living their everyday lives. In Italy, I believe that people living with disabilities should worry less about what others might think. Disability is a strength not a weakness, because to live with a disability you need to have a lot of strength. And I think, increasingly, able-bodied people are starting to value people with disabilities. I’m obviously talking about those people who know how to empathize.
What are you looking forward to?
I’m looking forward to the growing body of medical research that is finally taking some steps towards genetic medicine. I’m also looking forward to the architectural barriers being broken down all over the world, and for there to be true inclusion for all diversity. I’m looking forward to a world which no longer talks about differences in a negative sense but instead in a positive sense. What makes us unique are our particularities — our differences, after all.
So, if you wanted to give a positive message to people with the disease and also those without it, what would that be?
There’s a nice quote from Henry Ford that says: “Obstacles are those scary things you see when you take your eyes off your target.” (In Italian: “Gli ostacoli sono quelle cose spaventose che vedi quando distogli gli occhi dal tuo obiettivo.”) I believe that in life, you must always set yourself goals. Whatever your physical condition, whatever your economic condition, whatever the social context in which you grew up or live in, always set yourself goals and don’t let external conditions guide your life. We are the sum of our choices.
Tickets are being snapped up slowly but surely so if you fancy going along to Rome on July 23, tickets can be booked here.