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In memory of 11 year old Frankie - new osteosarcoma research.

When 11 year old Frankie Biggs passed away from osteosarcoma, his family asked Children with Cancer UK and the Bone Cancer Research Trust to do something about this brutal disease.

On Thursday 31st January 2019, Children with Cancer UK and the Bone Cancer Research Trust came together to hold the first ever International Osteosarcoma Research Symposium.

On World Cancer Day (February 4th), Children with Cancer UK and the Bone Cancer Research Trust announced their new partnership in Frankie’s memory to advance research into osteosarcoma.

In memory of Frankie

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, a rare form of bone cancer. 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.

Read and watch Frankie’s story

International Osteosarcoma Research Symposium 2019

In 2018, 11 year old Frankie Biggs passed away from osteosarcoma. His family approached Children with Cancer UK and the Bone Cancer Research Trust as they wanted to do something about this brutal disease.

On Thursday 31st January 2019 the charities came together to hold the first ever International Osteosarcoma Research Symposium.

On World Cancer Day (February 4th) both charities announced a new partnership in Frankie’s memory to progress research into osteosarcoma and improve outcomes for patients.

Watch this short film to see highlights from the International Osteosarcoma Research Symposium. Watch more videos.

New Osteosarcoma research partnership

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 around 50%. Osteosarcoma has now been identified as a priority by the National Cancer Research institute.

The International Osteosarcoma Research Symposium 2019, hosted by Children with Cancer UK and the Bone Cancer Research Trust, brought together researchers from across the globe to identify research progress, challenges that need to be overcome and opportunities to move research forward.

This year Children with Cancer UK will be committing £500,000 to osteosarcoma research. The Bone Cancer Research Trust launched ICONIC, a £450,000, UK-wide observational clinical trial for 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

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.

Professor Adrienne Flanagan
Professor Agi Grigoriadis
Dr Asif Saifuddin
Dr Beatrice Seddon
Mr Craig Gerrand
Dr Helen Roberts
Professor Jeremy Whelan
Katherine Finnegan
Mr Kenny Rankin
Dr Quentin Campbell-Hewson
Professor Richard Gorlick
Dr Robin Young
Dr Sandra Strauss
Professor Sibylle Mittnacht
Professor Stefan Bielack
Dr Zoe Davison

Closing workshop

The last session of the day at the first International Osteosarcoma Research Symposium in memory of Frankie Biggs was a workshop. Facilitated by Dr Ian Lewis and Dr Sandra Strauss the workshop was to look at prioritising future funding. This video shows the ideas generated and the discussions had which would then be taken forward by the Bone Cancer Research Trust and Children with Cancer UK.

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