23rd April is Global FOP Awareness Day when we ask the world to think about those living with Fibrodysplasia Ossificans Progressiva.
FOP is an ultra rare disease affecting only 1 in 1 million people, and causes bone to form throughout the body leading to painful, progressive and permanent loss of movement. Although living with FOP can be isolating, people with this disease around the world have been working together to find a cure.
Through the International FOP Association and national organisations such as FOP Australia, people with FOP and their loved ones have driven research to groundbreaking discoveries such as finding the single gene mutation that causes FOP. This discovery opened the door to clinical trials, with multiple drugs currently being tested as potential treatments to stop the disabling bone growth of FOP. You can hear some of the families and researchers who have worked together talking about the journey to discovery in a series of videos here.
This year, FOP Australia families have asked several sites around the country to help us shine a light on FOP. We are grateful for Adelaide Oval, Matagarup Bridge (in Perth), Manly Town Hall and Victor Harbor for showing the FOP Australia colours on April 23rd and hopefully helping us bring some attention and support to the ongoing work to help people living with Fibrodysplasia Ossificans Progressiva. We would love to see your photos on social media! Tag our Facebook and Instagram pages to help us celebrate this support and spread the message further.
You can learn more about FOP here. Information about how to support FOP Australia, and information for health professionals and families can be found at fopaustralia.org and ifopa.org.