On the subject of difficult times, Gandalf the Grey says that “all we have to decide is what to do with the time that is given to us.”
Young entrepreneur Bjorn Formosa was diagnosed with Motor Neurone Disease in 2014, and was given 3 years to live. With the time that he’s been given, he decided to start up ALS Malta.
Who is Bjorn Formosa in the eyes of Bjorn Formosa?
I consider myself to be a person who’s been developing time by time, depending on the situations that have come along in my life. Every experience has helped my character, and at this point in my life, I feel that I’ve completed myself by doing the very thing that really fulfils my every desire. I’m an accomplished and determined person who wants to succeed in and manage the activities that I engage in. This is what’s kept me going throughout this very difficult time of my life. I’m a bit stubborn, but it helps me get to all my targets.
How are you?
Even though my diagnosis was quite recent, my progression has been quite rapid compared to other cases of Motor Neurone Disease. In these past 8 months, I’ve practically progressed from leading a very active and normal life to now barely being able to move my hands. I’ve arrived at a point where walking is at its final stages, and I’ve started having problems with breathing, which is the final end point of the disease. I have no guarantee of how my disease will progress even though the forecast isn’t very bright for me. However, this gives me a higher incentive to keep going forward and to do as much as possible in order to accomplish my target in the little time that I have.
Some have described ALS as a demon that can’t be beaten, but you’ve taken a very strong-willed approach to it. Can you tell us more?
After experiencing this disease, I believe that everything can be beaten and that there can be a solution. ALS and Motor Neurone Disease are very tough and few things can compare to these. At the moment, things seem difficult because for the past 150 years that this disease has been identified, not a lot of advancement has been made in terms of research. We have identified some genes, including C90RF72, which is the main gene that causes the disease, but other than that and some few other genes, we haven’t made much progress in the development of new medicines. Nonetheless, I still believe that it can be beaten. If we focus and put more concentration on the research and garner a more collective effort in concentrated studies, I believe that in 10 or 15 years’ time, we’ll find a cure. I probably won’t be lucky enough to be around, but there are actually certain ALS cases where people have exceeded the five-year time limit.
I don’t feel demoralised or down in any way. I’m using my time to deliver the most that I can do, and it’s helped me discover new emotions and feelings which allow me to understand the real values we should embrace. This disease has brought out the best in me and the best in those who surround and support me. We’ve formed a great team of friends and collaborators who’ve come together to cover these incredible steps. We’ve held a lot of activities and now, this year, we’ll be delivering the projects that we’ve promised to work on. We’ve started giving services, including physiotherapy, psychological support and some medical equipment. We’ve also started some projects with the University of Malta, mainly launching the Motor Neurone Disease BioBank, which will help to set up a database of all ALS sufferers, and it will also allow us to identify local genes that are present in the local population of these sufferers.
If you could go back in time and give a message to yourself, at which point in your life would you go back to and what would you say to your younger self?
That’s a bit of a tough question. Had I not gone through all of this, I wouldn’t have done all that I have so far. However, if I had to choose, I’d go back to when I was 16 or 17 years old, where I was about to explore the adult world. I’d advise myself to take it a little bit easier, lead a more tranquil life and concentrate more on the people that surround me, rather than plan a long way ahead.
Aside from finding a cure of course, how can society be of service to the ALS community?
Society can be a service to the ALS community in various ways. ALS is not just the disease; ALS is a mixture of realities, an issue with disability, an issue with accessibility, an issue with acceptance. It encompasses the physical aspect of someone’s life. People can help us with moral support for both the patients and their carers and loved ones. I also encourage the public to attend our activities and follow our progress.