News & Information

News & Information


Ewing’s Sarcoma - Patients Story - graphic

Advances in Ewing’s sarcoma Research

In October 2020 the first International Ewing’s sarcoma Symposium was held virtually due to the Covid pandemic. It was hosted by our good friends the Bone Cancer Research Trust (‘BCRT’) and Professor Sue Burchill from the University of Leeds; the symposium was such a success that the above follow up event was held in a year later. This year’s virtual conference brought together over 100 researchers from across the world and attendees enjoyed fifteen presentations; some of which were followed...

Ewing’s Sarcoma - Patients Story - graphic

24 hours batting for Fred. Saturday 23rd and Sunday 24th October

Fred Collinson’s teammates of the U15s Gloucester cricket team are holding a 24-hour Net Session to raise money for the Ewing's Sarcoma Research Trust at Wycliffe College. During the 24 hours, we aim to beat Alastair Cook's record of scoring 12,472 test match runs: each ball hit = 1 run. We’re doing it because Fred Collinson, our opening bowler, was diagnosed with Ewing Sarcoma in September 2020. Over the last nine months, Fred has undergone 15 rounds of intense chemotherapy...

Ewing’s Sarcoma - Patients Story - graphic

We step in to financially support the EURO EWING Consortium (EEC) when their EU grant ceased following BREXIT

We asked Dr Abigail Evans, Scientific Project Manager of the EEC what this funding had enabled the EEC to achieve and here is her response: “The EEC aims to improve survival and outcomes for patients with Ewing sarcoma. Because it is a rare disease, it is essential that people in the field work together to share knowledge, experience, resources, and data, and for patients to be recruited to international trials. There is no funding from national organisations to support this so...

Ewing’s Sarcoma - Patients Story - graphic

Lily runs the London Marathon for ESRT

The London Marathon is up and running again and we have been blessed by the wonderful Lily Goulding who ran to raise funds for Ewing research. I stood along Birdcage Walk to cheer Lily and all of the other runners on to the finishing line which was only 1km away. Lily finished in just over 4 hours, what a run! And what a fantastic amount she raised. So far she has received donations with Gift Aid of, £2,665 which is way more...

Ewing’s Sarcoma - Patients Story - graphic

Optimising the Treatment of Teenagers and Young Adults with Ewing Sarcoma through an Increased Understanding of Clinical Pharmacology and Toxicity Biomarkers

Ewing sarcoma is a bone cancer that can be diagnosed at any age but is most commonly seen in teenagers. Current survival rates are highest in younger children and progressively fall with age, with potentially serious side-effects commonly associated with treatment. Routine tests do not accurately predict who will be cured or will experience increased side effects, which may be related to differences in drug exposures observed in different patient age groups. The current study will investigate what happens to...

Ewing’s Sarcoma - Patients Story - graphic

New research reveals a way to help identify which patients with Ewing Sarcoma are least likely to be cured by current standard treatment

For around one in three patients diagnosed with Ewing sarcoma in just one part of the body current treatments are ineffective. The new research, funded by the Bone Cancer Research Trust and the Ewing’s Sarcoma Research Trust, opens up the possibility of offering these patients additional treatment that could increase their chance of survival. The research team from the University of Leeds were able to identify the particular cancer cells – known as cancer stem-like cells – in Ewing sarcoma that...

Ewing’s Sarcoma - Patients Story - graphic

Anonymous Patient Story

Back in 2014 I had a Sunday job at my local dressage yard, so when I began to have aches and pains in my right shoulder, I dismissed it as pulled muscles and ‘growing pains’. After Christmas, the pain hadn’t gone away, and more symptoms began to appear. The inside of my upper right arm was unmistakably numb, and I had begun to twitch quite vigorously. After our concerns had heightened the most worrying appeared: my right eye lid...

Ewing’s Sarcoma - Patients Story - graphic

David’s Story

While Ewing’s sarcoma is a disease commonly associated with young adults and adolescents, that isn’t always the case. John Culshaw tells of his connection to Ewing’s, through his brother, David. Last year (2014) we lost my younger brother David to Ewing’s. He was 60 years of age. Ewing’s sarcoma is classed as a children’s disease and is extremely aggressive. The number of adults that contract the disease is in the order of 1 in 1,000,000 and unfortunately David was the one...

Ewing’s Sarcoma - Patients Story - graphic

Nikki’s Story

Nikki was diagnosed with Ewing’s Sarcoma in her pelvis in 2002, at the age of 16. I was diagnosed with Ewing’s in December 2002 at the age of 16 after finding a lump on my pelvis. I first noticed the lump in October and carried this burden alone for two months as I was too frightened to tell my parents. The day I finally told them was awful, although the relief I felt was enormous. After that day things happened very...

Ewing’s Sarcoma - Patients Story - graphic

Charlotte’s Story

Charlotte was diagnosed in 2009, aged 4. In September 2009, 4-year-old Charlotte came home and complained of a sore ankle. We had just purchased a trampoline for her birthday and thought it was due to a twisted ankle, but it persisted and awoke her in the night. After visiting the GP, we were told it was probably an infection in the joint with an appointment for over a month’s time to see a Paediatrician at Warrington Hospital. Call it mother’s instinct,...