Even as he prepares for two medical interventions, one of which may rob him of his voice, Bjorn Formosa is intensifying his efforts to raise funds for ALS sufferers like himself, whose expenses run into thousands of euros.

When people are diagnosed with ALS, they need equipment and therapy that could reach €40,000 in costs. The foundation set up by Mr Formosa assists about 20 sufferers.

Mr Formosa was speaking to this newspaper from the ALS Malta premises in Ħamrun, one month after he married Maria.

Married life is not much different from when they were engaged… although they now fight more, Ms Formosa joked.

As her new husband’s health deteriorated over the past months, the two have been inseparable, spending the whole day, seven days a week, together.

ALS is a progressive neuro-degenerative disease that affects nerve cells in the brain and spinal cord. It is a rare condition with no cure or effective treatment, however several have heard of it because of the Ice Bucket Challenge awareness campaign of 2014.

One of the people who took the challenge was Mr Formosa himself before he was diagnosed with the condition.

He spoke to the Times of Malta in 2015, in what was to become the first media outreach to raise awareness, before eventually founding ALS Malta.

Last year, Mr Formosa told this newspaper that the symptoms had developed at a quicker rate than he was expecting. His condition has now entered a “delicate stage”.

It is becoming increasingly difficult to eat, as he could choke on food or suffer aspiration pneumonia, which is a chest infection that develops after accidentally inhaling a small piece of food.

This means that, in the coming weeks, he will be fitted with a peg feed, or tube, that is put directly into the stomach through the abdominal skin.

Since Mr Formosa sometimes has difficulty breathing, another imminent medical intervention is a tracheostomy. This could see him lose his voice.

This year will be full of challenges, and there is also the possibility of death

Talking about these two upcoming interventions feels surreal for the 30-year-old. His intensive work for the foundation helps motivate him to grasp onto as many months of life as he possibly can, as ALS sufferers’ needs become clearer.

It has been calculated that every person diagnosed with ALS costs the foundation €40,000, with around 10 people being diagnosed every year, Mr Formosa said.

There are between 30 and 40 people with ALS in Malta, and 20 of them seek the foundation’s support.

Among others, the funds go towards the purchase of a motorised wheelchair and equipment that allows them to communicate as well as frequent physiotherapy and hydrotherapy. The foundation provides basic needs and services not offered by the State and is open to any collaboration with it to alleviate this burden.

People diagnosed with ALS need the equipment immediately – it does not make sense to have them wait for therapy, when their lifespan is limited to a few years, says Mr Formosa.

ALS Malta was initially set up to fund research to help find a cure for ALS. But when it learnt about sufferers’ financial challenges, it invested money in equipment and therapy that would physically improve their life. For this reason it needs continuous financial support from the public.

The foundation has also just launched a €90,000 research project to sponsor a postgraduate study programme in ALS, in search of gene mutations particular to Maltese sufferers.

ALS Malta is looking to fund a new programme every year while holding fundraising events to generate funds. Mr Formosa believes it will not be easy to replicate the work done last year: “I started off with a fully charged battery, and a year on, I’ve got little charge left.

“This year will be full of challenges, and there is also the possibility of death. It is going to be a difficult year, but it will not eat away at our plans for the foundation.”

But Ms Formosa brushes off talk of how many months are left, preferring to live life one day at a time.

She believes that the two of them can support other people who are going through something similar and answer questions that newly diagnosed people might have.

More information on how to help the foundation can be found on www.alsmalta.org/donate. You can also send an SMS to 5061 8170 to donate €4.66, or 5061 9271 to donate €11.65, or volunteer with the foundation.

You can also keep updated by following the Facebook page ALS Malta.