ALS sufferer Bjorn Formosa’s dream to help others with the degenerative disease to lead an easier life came true last night as Dar Bjorn officially opened its doors.
The Qormi home is the first to offer services to patients with ALS, multiple sclerosis and other neurological diseases. Mr Formosa, diagnosed with the degenerative disease at 28, has long expressed his wish to set up such a site, insisting on several occasions that this was one wish he wanted to see come true before the disease takes his life.
The 32-year-old IT guru hit the headlines as he made his daily struggles public in an bid to raise awareness about the disease, setting up the ALS Malta Foundation and donating €100,000 to fund research into the disease.
In March, over €900,000 was collected through a fundraising telethon, with the money going towards building the home.
During the telethon, Prime Minister Joseph Muscat, who inaugurated Dar Bjorn last night, announced the government would be covering the annual running costs.
ALS is a disease that affects nerve cells in the brain and spinal cord. The body’s motor neurones stop sending signals to the muscles until the muscles start to die, eventually leading to paralysis. At present there is no known cure.
As the disease has paralysing effects on patients, homes for those with ALS must be specially equipped and designed in a way that allows residents to control every aspect of their daily lives using just their eyes, which means that anything from lifts and doors to computers and televisions must be adapted.