This time last year, ALS was one of the hottest topics in the world thanks to the now-infamous Ice Bucket Challenge, but what is it exactly? And how is Malta faring with regards to it? Here we chat to BJORN FORMOSA about the role of the ALS Malta Foundation within Maltese society.
It’s hard to believe that many of us had never heard of ALS before last summer. Indeed, most of us first heard about it when the Ice Bucket Challenge started trending on our Twitter feeds and Facebook timeline.
The challenge was a simple one: have a bucket of ice-cold water dumped on your head and nominate others to do so, too. They then have 24 hours to comply or forfeit the challenge, and give a charitable donation towards ALS research.
While the origins of the campaign are actually shrouded in mystery – no one can seem to pinpoint the where, who or when – it went viral, and by the end of summer 2014, there were over 2.4 million videos circulating on social media with this tag. Yet, while the ALS Ice Bucket Challenge spurred millions in donations, most of us are still not quite sure about what ALS actually is.
“ALS, which is short for Amyotrophic Lateral Sclerosis, is sometimes also referred to as the Lou Gehrig’s Disease,” explains Bjorn Formosa, the founder of the ALS Malta Foundation.
“Basically, it is a neuro-degenerative disease causing the death of the body’s motor neurons,” he continues. “This stops them sending signals to the nerves, which, in turn, will stop them from communicating with the muscles, causing them to atrophy and die. Weakness starts in the voluntary muscles of movement until it reaches the involuntary breathing muscles and leads the sufferer to death within three to four years’ time.”
This destructive disease is often passed down the generations through genes and, thus far, the only medication available extends life by two to three months at most. And with it being a rather rare disease – it is estimated that ALS affects two people per 100,000 in Europe – research is scant and treatments are not incredibly effective; even in countries where health is taken incredibly seriously, such as Malta.
“ALS is still not very well known and it is not catered for appropriately in Malta,” explains Bjorn. “At present, a patient is given a possible diagnosis of what he or she might have – ALS is very difficult to diagnose due to non present bio-markers*, which could give clear indications of the disease – and this is then followed every six months for disease progression. (Biomarkers are characteristic biological properties (or molecules) that can be detected and measured in parts of the body like the blood or tissue).
“There is, however, a considerable number of patients being diagnosed each year with this disease here in Malta, but no actual record is currently being kept of persons affected… Which says a lot about the situation of ALS patients in Malta,” he continues.
The aforementioned drug, which is the only one available on the market for ALS sufferers, is currently not even imported to the Island. Patients, in fact, often have to rely on charitable foundations for basic medical beds, wheelchairs and hospice services as social benefits are absolutely not parallel to the extreme costs of a disease that requires 24/7 care.
“But ALS sufferers need much more than that,” Bjorn goes on to explain. “Physiotherapy is an essential treatment in the various stages of ALS and only one session per month is assigned to ALS sufferers in the overcrowded and unequipped ‘neuro-gym’ at St Luke’s hospital.
“Advanced Assisted Communication (AAC) devices and eye-gaze technology, which could give a lifeline to patients in a locked-in state, are unheard of and patients are left to wait for the inevitable with few possibilities of communication.”
Indeed, the current social benefits are not enough to provide assisted ventilation systems, feeding tubes, mobility devices, and all the other assistance that’s needed, which, granted, costs a lot of money.
As an ALS sufferer himself, Bjorn knows exactly the hardships that other people who have been diagnosed with ALS go through. And it was for that reason that, this year, he set up the ALS Malta Foundation with three main aims: to raise awareness of the disease locally, to improve the quality of life of ALS sufferers, and to ameliorate ALS/MND (motor neuron disease) research at the University of Malta.
“While I set up the Foundation and I’m its original founder and chair, I try to not limit myself to just the administrative tasks,” says Bjorn. “In fact, I try to spend all the energy I can muster on the various tasks required from such an organisation, from advocacy to marketing, web-development to fund raising management, and anything else that may be needed – often with the help and support of family, helpers and great friends, of course.”
Recently, Bjorn’s brainchild hit the news when it hosted an Ice Bucket Challenge to raise funds and awareness in Malta. “It was a huge success all over the month of August and donations are continuing to pour in,” he explains.
RIDT has been working with the ALS Malta Foundation, too, particularly on the research aspect of things. And with Dr Ruben Cauchi, the Senior Lecturer and Head of the MND Research Laboratory at the University of Malta’s Faculty of Medicine and Surgery, currently researching the function of RNA (Ribonucleic acid)-binding proteins that on mutation cause a degenerative MND, Malta may prove to be a beacon of hope for ALS sufferers the world-over.
RIDT has also been instrumental in consulting and aiding with the bureaucratic, marketing and PR needs of the foundation.
“And I’m happy to reveal that the ALS Malta Foundation and RIDT are planning a series of events together with the aim of raising funds and boosting MND research on the island,” Bjorn concludes.
Needless to say, there is still a lot left to be done in this area, but the ALS Malta Foundation, thanks to funds from people just like you, is helping to pave the way for a better future for ALS Sufferers.
The ALS Malta Foundation, along with RIDT, are working on raising funds to help raise awareness, better the lives of ALS sufferers, and improve ALS/MND research at the University of Malta. Help us help them get there, by donating at http://www.alsmalta.org/donate. Alternatively, you can send an SMS to 5061 9271 to donate €11.65 or to 5061 8170 to donate €4.66. Monthly recurring donations starting from as low as €1 (per month) can also be set at www.alsmalta.org.