PHARMAFREAKS, we’re looking to you for support. As a strong community, we know that we celebrate our successes as a team and lift one other up through difficult times. Last week we heard the news that a three-year-old boy named Michael is the only child in Canada to have been diagnosed with the incredibly rare disease, SPG50. Only 57 children worldwide have this disease, leaving it a sector that sees zero funding. His parents, Terry and Georgia Pirovolakis, shared their story on Global News on 28 June 2019 to raise awareness of his cause. Michael may look normal, but he suffers from a neurodegenerative disease (caused by a gene mutation), resulting in low muscle tone — a lack of strength to play like his brothers and sisters — and weakened learning abilities. With time, SPG50 has the power to completely rob Michael of all mental and physical functions.
Michael’s future is currently unknown due to the lack of research and investment in this disease. His parents are dedicated to finding a cure and are fundraising towards a goal of $3 million. The money will go to hiring clinicians, establishing trials and eventually getting approval to apply a winning outcome. As part of their strategy to engage relevant communities such as ours, Terry and Georgia recently organized a paid-entry plane pull which saw teams come together to pull a plane as far as they could.
Please help us to help them give Michael hope for a stronger future. Visit their GoFundMe page here to help them hit their target! If you want to show your support on social media, use the hashtag #CureSPG50. Anything you do will mean a huge amount to the family and to our PHARMAFREAK family.