Give the Gift of Hope this Christmas - FOP Friends

FOP is an ultra-rare genetic disorder that causes the body to grow unwanted bone. Affecting just 1 in a million people, it is the only known condition where one healthy organ system transforms into another, turning muscles, tendons, and connective tissue into bone.

This new bone forms in ribbons, and when it crosses a joint or develops within a muscle, movement is lost forever. Over time, sufferers become locked inside a painful, debilitating second skeleton.

FOP is progressive and can strike unpredictably. A bump, fall, fatigue, virus, or stress can trigger an FOP flare-up, but it can it can also strike with no warning. The rate of progression varies dramatically; some are affected from birth, while others experience a quieter progression for longer. This unpredictability means FOP can cruelly steal a child's independence overnight.

In the past few months, two effective treatments for FOP have been made available to those living with FOP in the USA. But that doesn’t change anything for our families in the UK. We still have a long way to go.

This does mean we end the year with real hope that a treatment is within our grasp, but our work is far from over.

We have a long road to get the approval required for patients in the UK. And there is still no treatment available for our youngest children who need a treatment before FOP has a chance to take away their mobility.

Until that day comes, our families need our support, guidance, and community more than ever to navigate the daily challenges of living with FOP.

No one should have to face the fear, pain, isolation, and loss of independence caused by FOP alone.

Your gift today brings light, strength, and hope for tomorrow for everyone living with FOP.

Thank you x