Updated with final fund-raising figures

A man who suffers from a degenerative disease with no cure has donated €100,000 to scientific research into it.

Bjorn Formosa announced the massive personal donation this evening during a fund-raising telethon on TV programme Xarabank.

The telethon raised €437,462 for research into ALS, a progressive neuro disease first brought to the public's attention by the 2014 ice bucket challenge craze that swept through social media.

The money will be given to ALS Malta, an organisation Mr Formosa himself founded. It will be used to buy equipment to ease the life of people living with ALS, as well as to help finance research into finding a cure. 

Mr Formosa, a 29-year-old IT guru, was diagnosed with ALS two years ago, and has battled to raise awareness of the condition ever since.

In an interview with Times of Malta published on Tuesday, Mr Formosa said he was ‘working ‘gas down’ on raising awareness and funds until I still have the time, and ALS Malta foundation will take up from where I leave.”

The condition has taken its toll on his health. "I’m already in a wheelchair and I’m finding it difficult to breathe and to speak at times,” he had said during the interview.

Before his diagnosis, Mr Formosa was a self-employed IT and gaming professional who made a good living. Then came the diagnosis – literally a one-in-a-million occurrence for someone under the age of 30.

ALS is a progressive neuro-degenerative disease that affects nerve cells in the brain and spinal cord. As the disease progresses, the body’s motor neurones stop sending signals to the muscles until the muscles start to die, eventually leading to paralysis. There is no known treatment or cure.

Mr Formosa told Xarabank that, upon hearing his diagnosis, his first instinct was to go on a spending spree and blow his savings like there was no tomorrow.

That instinct soon quietened down though, to be replaced by an altruistic streak that has seen him raise awareness and funds for ALS research in a race against time.

Having raised almost half a million euros in this telethon, Mr Formosa has no intention of resting on his laurels. He already has a next event lined up - a concert called 'Beat it May' at the Aria Complex in San Gwann on Saturday 20 May.

attach id=506521 size="large"]Photo: Shutterstock[/attach]