AFL players added to the pre-grand final buzz during a successful community event on Somerville on 21 September, which raised more than $3000 for research into a debilitating progressive disease.
The family of 21-year-old Somerville resident Tyson Stanley, who has Fibrodysplasia Ossificans Progressiva (FOP), organised the event to raise community awareness of the disease and to fund much-needed research.
There is currently no cure for the rare and crippling disease, which causes bones to form in muscles and other soft tissue.
Tyson said he was pleased football players Will Hayes and Lachie Hunter gave up their time to attend the day, held at the Somerville Football and Netball Club, and spend some time kicking around with the community.
He said the event was the first community events the family had held, with plans for another one next September.
Tyson was not diagnosed with FOP until he was nine, because the rarity of the disease means it is not well known about or understood.
At six, he had surgery to remove bones growing in his hip joint, but doctors soon discovered surgery was not the answer, as new bone merely replaced the old one, and often grew bigger and at a faster rate.
Despite his neck fused since birth and his mobility severely restricted, Tyson remains positive and has his focus on making life and the future a little better for FOP patients.
He and his family have founded FOP Australia, with the aim of raising awareness and research money, supporting sufferers and their families, and ensuring that anyone with FOP has access to early and equitable access to treatments.
Anyone or businesses that would like to find out more about FOP and sponsor or support Tyson’s next community event can contact info@fopaustralia.org or go to www.fopaustralia.org
First published in the Western Port News – 28 September 2022
