In a month's time, Rebekah, Dad and I will be starting our trek to Everest Base Camp and we'd love to raise as much money as we can for FOP Friends.

Fibrodysplasia ossficans progressiva (FOP) is one of the rarest and most disabling genetic conditions known to medicine. FOP causes extra bone to form in muscles, tendons, ligaments and other connective tissues. As these bridges of extra bone develop across the joints, it progressively restricts the person's movements. Any attempt to remove the bone would aggravate the FOP, accelerating the process. Flare-ups are unpredictable and painful and currently there is no known cure for FOP. FOP progressively imprisons the body in bone: a healthy mind locked in a frozen body.

Ellis Grant, is the lovely son of my amazing colleague Suzanne Grant and he's currently living with the condition. Ellis is 14, cheeky and has the best sense of humour, which I've been lucky enough to experience over many a zoom call. He loves star wars, Lego and horse riding, and although FOP has changed some of things he can do, he is determined not to let it stop him from having fun.

Research into FOP in the UK receives no NHS or government funding. The FOP research team at the University of Oxford, led by Professor Alex Bullock, is funded solely by FOP Friends. I'd therefore love to help FOP friends fund research to find an effective treatment and cure for FOP, helping Ellis and everyone else living with the condition. If you can spare anything (big or small) it would be hugely appreciated.