What we do…
From those first devastating words “You have FOP”, we’re here to support you as much or as little as you need.
We understand that people deal with things differently, and at different rates. Just remember, you are not alone.
We connect people with FOP and their families, with others, encouraging them to joint the small yet special community.
We support and thank all our wonderful fundraisers, personally. Without them, we wouldn’t be able to continue to support the University of Oxford’s FOP research team, and other vital projects that take us closer to finding that cure. Every donation we receive, every person who rises to a challenge, is valued and appreciated.
We are proud to say that over 95% of fundraised money goes towards supporting our mission: to find a treatment and a cure for FOP.
We are not doctors or experts in FOP; we too are learning as we go. We’re all on this journey together.
We’re happy to share our own experiences, but more importantly, we’re able to signpost people with FOP, and their families, to the people and services who can really help them. We work with medical professionals both here and abroad, health and education services, and other charities.
We have held three Conference and Family Gatherings, with planning for our fourth now underway. The event is well-respected and a date in the international FOP calendar.
We have also organised two family weekends so that children with FOP and their families can take a bit of time out to build a support network around them: nurturing friendships that will support them on their journey.
We have travelled far and wide to keep up to date with the latest FOP developments, and to work alongside the other patient organisations, all to find that cure. Covid has paused that for the past two years, but we have continued to connect with our friends around the world through virtual channels.
So far, we have visited 23 cities and travelled over 100,000 miles, to represent FOP Friends around the globe.
We regularly meet with medical professionals, pharmaceutical companies, scientists, and other rare genetic charities to share good practice. We keep up to date with how other organisations are meeting their challenges and bring new ideas back to our charity. We are currently in talks with the government and other policy-making organisations to get us ever nearer to enabling our patients to access a treatment.
Oliver made his speaker debut in 2018, presenting to Regeneron, receiving a standing ovation for his inspirational speech. In 2019, Oliver and Rohan took part in a patient panel for Ipsen, honestly and bravely answering questions about how FOP impacts their lives.