​We are delighted to announce we will be working in collaboration with Children with Cancer UK to advance research into osteosarcoma.

Last year Frankie Biggs, passed away from osteosarcoma. Since his passing, Frankie's family approached both charities, today we are excited to announce we will be embarking upon a new partnership in his memory and to make the biggest impact in addressing this aggressive rare form of cancer.

Frankie started limping when he was nine years old and was told by four different doctors that it was ligament damage. Frankie’s parents took him to A&E and following an X-ray he was diagnosed with osteosarcoma, bone cancer at Eltham Hospital. Frankie’s mum, Alison Biggs, said;

It had broken his knee cap in half and spread round his little body, both knees and lungs. My son took everything that stood in his path, from MRI scans, a bionic leg, the lower lobe of his lung being removed to eventually too many brain tumours to count.

This shouldn't be happening to children and in the 2 years of living and breathing cancer with my son, I also watched 6 other children die from this awful disease, one of them was Frankie's girlfriend, who he met at the hospital.

He was my world, my hero, my best friend and my life. Cancer has changed us all, but it made my son the hero he was and still is, in my eyes, today.

As previously reported, osteosarcoma is a long way behind other cancers in terms of new treatments and improvement in survival due to a lack of research investment. Overall five-year survival remains below 50% and the disease has now been identified as a priority by the National Cancer Research Institute.

On Thursday 31st January this year we held our first ever International Osteosarcoma Research Symposium with Children with Cancer UK, attended by Frankie's mum, Alison, the event brought together researchers from across the globe to identify research progress, challenges that need to be overcome and opportunities to move research forward.

Speakers during the day included; Alison Biggs, Paul Britton, Professor Stefan Bielack, Professor Adrienne Flanagan, Professor Richard Gorlick, Dr Ian Lewis, Dr Sandra Strauss, Professor Jeremy Whelan, Dr Helen Roberts, Katherine Finnegan, Mr Craig Gerrand, Dr Beatrice Seddon, Dr Robin Young, Professor Dominique Heymann, Professor Sibylle Mittnacht, Professor Agi Grigoriadis, Mr Kenny Rankin, Dr Asif Saifuddin, Dr Quentin Campbell-Hewson and Dr Zoe Davison.

Highlights from the day

Dr Zoe Davison, Head of Research and Information at the Bone Cancer Research Trust, said:

This is a unique opportunity, collaboration is essential to make progress with rare forms of cancer. The Bone Cancer Research Trust are the only charity dedicated to fighting primary bone cancer and we are delighted to be moving osteosarcoma research forward with Children with Cancer UK. We are committed to supporting the research community so that we can revolutionise osteosarcoma treatments and improve outcomes for patients and their families.

Dhivya O’Connor, CEO at Children with Cancer UK, said:

We have made huge strides in survival rates for childhood cancer over the past years. But there is still a long way to go, particularly for those cancers with poor prognosis like osteosarcoma. We have partnered with Bone Cancer Research Trust as they share our vision to develop kinder, more effective treatments for young patients. We are hoping this partnership sees a step change in survival rates and quality of life for children and young people affected by this devastating disease.

This year we launch ICONIC, a £450,000, UK-wide observational clinical trial for patients of all ages, bringing about collaboration between all new patients diagnosed with osteosarcoma, the medical professionals involved in treating patients and scientists trying to understand the disease and find more effective new treatments and Children with Cancer UK will be committing £500,000 to osteosarcoma research.

Read Frankie's story