News & Information

News & Information


Thank you to our fundraisers who have active JustGiving pages. Check them out

Rosie Fisher held a gala dinner and charity auction last November to support her friend Eddie Jordan. So far she has raised over £15,000 and you can donate here. Kelly Drummond is holding a 12 month fundraiser in memory of her sister, Kate. She has raised £31,665 and hopes to reach her goal of £50,000. If you would like to donate you can find her link here. Fayth McCormick is hoping to raise £10,000 by doing a 10k run in September. You...

EURO EWING Consortium May Newsletter

Along with the BCRT, we are proud to support the work of the EURO EWING Consortium (EEC). The EEC aims to improve survival and outcomes for patients with Ewing sarcoma. As 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 financial support from the Ewing’s Sarcoma Research Trust has been essential...

Billy Mumby Memorial Football Match

Matt Curtis and the other friends of Billy Mumby are organising a Charity Football match in Billy's memory. Billy passed away from Ewing’s Sarcoma at just 21 years old. Billy was a football fanatic who played for 2 clubs throughout his life and his friends can think of no better way of remembering him than through a football match made up of his friends and former teammates. The event will take place on 9th July at Belton Recreation Ground and...

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 the...

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 had...

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 in...

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 quickly....

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, but...

Ewing’s Sarcoma - Patients Story - graphic

Iain’s story

Iain was diagnosed with Ewing’s Sarcoma in November 2007, at the age of 11. Until September 2007 I was active and did lots of sport, I especially enjoyed being a goalkeeper. For about a year I had a sore right thigh – after a couple of days the pain always went away and then would come back a few months later. The doctors thought it was because of my flat feet and then because I injured my right ankle that it...

Ewing’s Sarcoma - Patients Story - graphic

Ruth’s story

Ruth was diagnosed in 1992 at the age of 15. At the age of 15 I began to get terrible pains in my leg. The pain was intermittent but when it did come it was excruciating and there was nothing, I could do to relieve it. This pain came and went sometimes lasting weeks at a time. At the base of my spine, it felt like there was a massive toothache, a deep consistent stabbing pain. A duller tighter pain with a...