In Autumn 2018, we put out an urgent appeal to our members.
Josh Barnfather, then a 30-year-old robotics engineer, was told that the standardised treatments for his angiosarcoma (a cancer affecting the inner lining of his blood vessels), were no longer working.
His options were limited, and he needed to raise around £100,000 to receive an immunotherapy treatment that wasn’t readily available on the NHS for his specific condition.
“No matter how small, I am grateful for all contributions,” Josh wrote on his Just Giving page.
Since then 1,140 people have gathered together to donate what they can to make a difference.
And, what a difference they’ve made to Josh’s life.
Josh was able to pay for the immunotherapy treatment he needed to extend his life, as well as the associated care.
His ongoing treatment has worked well; within a few months, he saw an 80% reduction in his cancer.
“I am now in a stabilised condition and, as my doctor says, I still have the cancer, but it’s a percentage I can live with.”
The NHS has seen the positive impact the immunotherapy has had on Josh and are now funding the treatment.
Josh is really pleased his case has been able to help with some crucial research into whole-genome sequencing and its effects to aid treatment with rare diseases.
This treatment wasn’t readily available before because clinical trials are pretty much impossible to conduct with such rare cases of cancers.
“It’s unlikely that a case like mine will happen exactly the same way, however, the research is bound to help others who have rare diseases. So, I’m so glad some good has come out of it.”
While still receiving regular treatment, Josh is currently working in Oxford on a robotics project to help with radiation monitoring for the nuclear industry.
“I am developing a robot to go inside nuclear facilities and map out radiation.”
He was also recently elected as a Fellow of the Institute of Mechanical Engineers.
It’s a joy to see him looking so well - Josh’s eyes light up when talking about the number of people with rare diseases he has potentially helped in the future.
“Without everyone’s support, I wouldn’t have been able to make that bank transfer to the hospital and say yes so quickly to the immunotherapy treatment. So, I’d just like to say one more time... thank you.”