883Chris Bedford-Gay (Cheshire)
884Helen Bedford-Gay (Cheshire)
Chris and Helen Bedford-Gay, from Cheshire, are the co-founders of ‘FOP Friends’, the only charity in the UK that supports patients with Fibrodysplasia Ossificans Progressiva (FOP) condition, which involves the formation of bone in muscle ligaments and tendons creating a second skeleton.
After their son Oliver was diagnosed in 2009 with this rare and debilitating condition, Chris and Helen established a charity to support the 55 patients in the UK who have the condition and fund research into finding a cure. The pair have organised bi-annual conferences attended by leading international experts and through challenges such as the ‘Great North Run’ and cycling from Lands End to John O’Groats have raised over £135,000 to support research posts at the University of Oxford, where scientists are undertaking research into the mutant gene that causes the condition.
In a personal letter to Chris and Helen, Prime Minister Theresa May said:
“You have both responded to the extremely challenging personal circumstances of your son Oliver’s diagnosis with tremendous strength. Through your charity ‘FOP Friends’, you are providing vital support to other patients and their families affected by Fibrodysplasia Ossificans Progressiva across the UK. By hosting major international conferences and providing funding for research posts, you have demonstrated a remarkable commitment to finding a cure for this debilitating condition.”
Chris and Helen said:
“We are thrilled to have been awarded the Points of Light in recognition for the work we have done, setting up a charity to support families such as ours, who are dealing with the diagnosis of fibrodysplasia ossificans progressive, or FOP. When we welcomed our first child Oliver into the world, we had no idea what journey lay ahead for us. After being told our little boy had a rare genetic disorder for which there was no treatment or cure, we had to fight it. We simply set out to raise money and support the researchers to find a treatment so he could have the best possible life. We saw it as doing our job of being a good mum and dad. Although living with a child with a complex medical need is challenging, along the way we have had the opportunity to meet some of the most wonderful people whom we now consider close friends. Every day we get to see the generosity and kindness of others as they support us, the charity, and all the other children and people affected by this cruel disease. The researchers are getting ever closer to a treatment so we really do have hope that there will be something to help Oliver before FOP takes a hold of his little body. That day can’t come soon enough. It’s a great honour to have our efforts recognised with this award and we gratefully accept it for all the amazing FOP children and adult who live with FOP.”
The daily Points of Light award recognises outstanding individual volunteers - people who are making a change in their community.Volunteer now