Tyson Stanley, the son of Programmed Operations Manager, Dan Petrovic and Talia Wilson, has been bravely battling Fibrodysplasia Ossificans Progressiva (FOP), one of the rarest and most disabling genetic conditions known to medicine. It occurs when bone forms in muscles, tendons, ligaments, and other connective tissues and affects roughly only 1,000 people globally. Tyson suffers from a rare strain and works hard at fundraising, not for himself but for future generations, so they don’t have to go through what he has been through.
Smashing Goals and Raising Awareness
Our team at Programmed recently participated in this year’s Run Melbourne event to raise funds and awareness for this debilitating disease.
‘’I want to send a very heartfelt thank you to each of you for participating in the Run Melbourne event. We, as a group, were able to raise over $15,000 for FOP Australia. This is a mammoth effort and is considered a major fundraising event for FOP Australia. I currently sit in the role of chair for FOP Australia, and it is so rewarding for me to be able to achieve the goal of not only raising such an amount but also introducing so many new people to Fibrodysplasia Ossificans Progressiva. It is an extremely rare genetic condition, and Tyson is one of 19 people in Australia with it. That definitely makes it hard to reach a wide audience of support and understanding,’’ said Talia Wilson, Assistant Administrator at Programmed.
‘’The funds we have raised with this event will be used to support more research and help those with FOP in a more immediate and practical fashion with funds to purchase things they may require to lead a more normal life,’’ said Talia.
Donate Today – Help Raise Awareness In The FOP Community
Tyson’s journey with FOP has come to an end, and his family laid him to rest in 2024. However, they continue to advocate for the FOP community so that future families will get the support they need.
Tyson’s family have often been the experts in a room full of doctors. Globally, fundamental issues remain around raising awareness of FOP among healthcare professionals, identifying individuals with FOP, reducing time to diagnosis, and ensuring access to best practices in care, support, and clinical research.
As much as Tyson dreams of being able-bodied, he is focused on what he’s in control of. He is passionate about raising awareness and funds for FOP and changing society’s perception of physical disability.
To donate, please click here. Your support will go a long way.
