Everyone at Sarcoma UK is deeply saddened by the death of our supporter and friend, Roy Mujenyi Mugera.
Roy lived with synovial sarcoma, a cancer so rare that fewer than 80 people are diagnosed with it in England each year. After his diagnosis, he became one of our most generous supporters, sharing his experience to help raise awareness of sarcoma and support others facing the disease.
Our thoughts are with Roy’s family, friends and everyone who knew and loved him.
Finding his tribe
When Roy was first diagnosed, he spoke openly about how isolating it could be to live with a rare cancer.
“When I first heard the word sarcoma, I felt very alone. Who else has sarcoma? I went on YouTube; where was my tribe?”
Roy found that tribe.
We first met Roy during our Days to Diagnosis campaign, when we invited people affected by sarcoma to take part in a photoshoot highlighting the importance of earlier diagnosis.
People arrived throughout the day expecting to have their photograph taken and head home. Instead, many stayed. Complete strangers spent hours talking, sharing experiences and getting to know one another. They had found people who understood what living with sarcoma was really like. Roy was one of them.
That day marked the beginning of a relationship with Sarcoma UK that continued until his death on 8 July 2026. Roy shared his story on several occasions reaching the national press more than once. He regularly shared our posts and encouraged others in the sarcoma community, helping people feel connected through the shared experience of a rare cancer.
Helping others
Roy believed that sharing his story could make a difference. He spoke publicly about living with synovial sarcoma, helping more people understand the realities of a rare cancer diagnosis. His openness helped raise awareness of sarcoma while offering reassurance to others facing similar experiences.
Just a few weeks ago, Roy returned to work with us once again.
We invited him to take part in a new film encouraging people affected by sarcoma to contact our Support Line. By then, Roy was visibly unwell. We asked whether he felt able to take part, but he was clear that he wanted to do it. He hoped that by sharing his experience, someone else might feel less alone or be encouraged to reach out for support.
We were able to show Roy the first edit of the film before he died, and he gave it his approval. With the support of Roy’s family, we will continue to share his story in the way he intended, helping others affected by sarcoma find information, support and community.
“Roy often said that Sarcoma UK helped him ‘find his tribe’. Looking back, I think what stands out is how quickly he became part of that tribe for other people. Whether he was sharing his own experience, supporting others online or taking part in our campaigns, he always wanted people to know they weren’t alone. We are enormously grateful to Roy, and to his family, for trusting us to continue sharing his story.” Enda Guinan, Digital Communications Manager, Sarcoma UK
Although Roy first came to us looking for his tribe, he left behind a community that is stronger because he was part of it.
