Charities collaborate to launch £1 million research programme into rare bone cancer

The collaboration will commence with a dedicated symposium on October 14^th, where researchers will be brought together to stimulate ideas and plan the development of new treatments. At the event, which is being held in memory of Liberty Schurer who died from the disease in October 2017, applications for the £1 million grant will officially open. Liberty was diagnosed with Ewing sarcoma of her tibia on her 13^th birthday in September 2016. She had been struggling with intermittent pain in her lower left leg for over 20 months, particularly at night, which was unfortunately misdiagnosed as growing pains and sports injuries during numerous GP and hospital visits. By the time a correct diagnosis was made, the tumour was already nearly 20cm in length and had burst through her bone into the surrounding soft tissue. Liberty’s mum, Karen Schurer, said:

Liberty had a zest for life and amazed everyone during her treatment. She rarely complained and just got on with it. She was known to throw on her wig, lashes and make-up and dash out to the next party or next school disco. No matter what was thrown at her – chemotherapy, hair loss, transfusions, vomiting, 9-hour limb salvage surgery, learning to walk again, stem cell transplant, liver failure, relentless scans and tests or intensive radiotherapy. Liberty faced it all head on, she was a true warrior princess and heroine in every sense of the word.

Just days from the end of her treatment in August 2017, Liberty sadly discovered a new lump in her thigh. Emergency scans revealed that not only had the Ewing sarcoma returned, it had spread throughout her lungs, liver and lymph glands. No further treatment options were available and nothing more could be done. Liberty passed away on October 11^th 2017, two weeks after her 14^th birthday. Ewing sarcoma represents approximately 15% of all primary bone cancers and approximately 0.02% of all cancers diagnosed in the UK each year, with a peak of incidence between 10 – 20 years old. Through a chronic lack of research and funding, no new treatments have been developed in over 30 years. Overall, 5-year survival has remained static for decades at 50-60% however, for patients with metastatic disease, this can be as low as 20-35%. By combining forces, the Bone Cancer Research Trust and Children with Cancer UK hope to bring about a greater interest in Ewing sarcoma research that will accelerate the development of new and kinder treatment options that are so desperately needed for patients like Liberty. Mat Cottle-Shaw, CEO of the Bone Cancer Research Trust, said:

We are delighted to be partnering with Children with Cancer UK, their donation of £1million will allow us to launch this project which we hope will have a transformational effect on new treatment options for Ewing sarcoma patients. It was Liberty’s wish that no other children would suffer like she had and that other families wouldn’t be ripped apart in the same way and it is this determination and strength from patients like Liberty that is at the heart of this new collaboration. Together our charities are striving to find kinder and more effective treatments to improve outcomes for future Ewing sarcoma patients.

Jo Elvin, CEO at Children with Cancer UK, said:

Children with Cancer UK is proud to collaborate with the Bone Cancer Research Trust. It is the courage and strength of incredibly brave children like Liberty that drives us to ensure that we continue to do all we can to support dedicated researchers to drive kinder and more effective treatments. Partnering with the Bone Cancer Research Trust to accelerate research into Ewing sarcoma is another vital step to wards our end goal of a world where every child and young person survives cancer.

Details on the £1 million grant application process is available on the Bone Cancer Research Trust website. Funded is expected to be awarded in December 2023.

About the Bone Cancer Research Trust

The Bone Cancer Research Trust was established in 2006 and is now the leading charity dedicated to fighting primary bone cancer. The charity’s mission is to save lives and improve outcomes for people affected by primary bone cancer through research, information, awareness, and support. To date we have funded 120 pioneering research projects, 33 of these aimed specifically at Ewing sarcoma totalling £1.35m of investment. In addition, 33 projects are focused on all types of primary bone cancer and amount to a research investment of £858,318.23. Together, these 66 grants represent a commitment of over £2.2m of research investment benefitting Ewing sarcoma patients. For more information, visit www.bcrt.org.uk.  

About Ewing sarcoma

Ewing sarcoma is the second most commonly diagnosed form of primary bone cancer in children and young adults. Ewing sarcoma can start anywhere in the body, but more often it is found in the pelvis, the chest or in the bones of the legs. The peak of incidence (between 10 20 years of age) of Ewing sarcoma patients corresponds with times at which a person’s bones are growing fastest. The average age of patients with Ewing sarcoma is 15 years old. Treatment for Ewing sarcoma involves treatment to the whole body with chemotherapy, and treatment of the tumour site with surgery and radiotherapy. Each Ewing sarcoma patient has a slightly different treatment plan, depending on the stage of their disease and where in the body their cancer has started.  

About primary bone cancer

Each year in the UK and Ireland around 560 new cases (200 under the age of 25) of primary bone cancer are diagnosed, and around 300 people die from these cancers. It is estimated that internationally a new diagnosis is made every 10 minutes. The main symptoms are bone pain which may come and go and/or swelling. These symptoms can be mistaken for growing pains or other common medical conditions such as tendonitis or arthritis. There has been little improvement in primary bone cancer survival rates for over 30 years and the Bone Cancer Research Trust is fighting to improve early diagnosis and referrals.