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Talan's Trust

Talan Penny was 19 years old when he passed away from rhabdomyosarcoma. The charity Talan’s Trust was set up in his name and honour.

Talan Penny on a surfboard in the sea

Talan was raised in Cornwall and had always been an active and well-liked member of Bude’s community.

His mother, Sarah, says: “Right from when he was a little boy, Talan would never sit still. For him, a waste of a day was sat inside. He started with skateboarding, then went on to football, rugby, swimming – he even swam for the county – gymnastics, and when he was eight, he joined the local surf club in Bude. Surfing was Talan’s life really. Right up until he was ill, he was an active member of the club – out there in the waves was the one place he could be himself. If you couldn't find him, he'd be surfing or with his friends at the surf club.

“Before he became ill, Talan was just a normal teenager, looking forward to being 18 and leaving school with a BTec in sport. He’d just passed his lifeguard exam and would no doubt have life guarded on his beloved beaches the following summer. Then around his birthday, he complained of tiredness and aching shoulders, but it wasn't for another two weeks that it also became clear he was struggling to urinate. This culminated with a trip to A&E and ultimately his bladder was drained of two litres of urine. He was released from hospital having been taught to self-catheterise. Although I was not happy, he was given an appointment to follow up in a month's time. It was another month before we got a diagnosis of stage 4 alveolar rhabdomyosarcoma.

“Talan was very ill by the time he started his chemo in February 2016. He rallied and had a good summer, but after round 7 of chemo felt a lump on his ribs and it was found to be the cancer returning. We were told there was no more front-line treatment to cure, only prolong his life. Talan became very withdrawn and very sad. It was a dreadful time. He died May 4th 2017 and we lost the light in our world.”

Never forgotten

Talan didn’t want to be forgotten. So Sarah set up Talan’s Trust to ensure that would never happen. The affection felt for Talan in his local community remains as strong as ever, and their support has been a key part of Talan’s Trust having raised in excess of £100,000 to date for rhabdomyoscarsoma research here at the ICR.

One of the key events of the charity’s calendar is ‘Tal19’. This annual fundraiser is held close to Talan’s birthday in November. The main event is a 19km multi-terrain race – with each kilometre marking a year of Talan’s short but well-lived life. The event also encompasses shorter races and a week-long challenge to cover the distance however participants like – including walking, running, cycling or swimming.

Talan’s Trust’s generosity is making a great deal of progress possible in Professor Janet Shipley’s sarcoma molecular pathology laboratory. Professor Shipley is one of the world’s leading experts on the biology of sarcomas. She and her team are studying the molecular profiles and underlying biology that drives sarcoma growth – including rhabdomyosarcomas.

Talan’s Trust’s support has contributed to the largest and most comprehensive study of rhabdomyosarcoma to date. Professor Shipley was the leader of the study, which found that specific genetic changes in tumours are linked to aggressiveness, early age of onset and location in the body. All these factors affect the chances of children, teenagers and young people surviving their disease. Understanding these genetic factors could lead to new ways of tailoring treatment for each patient.

Sarah says: “Setting up our charity Talan's Trust is the one thing that has kept us going, and I'm proud of what we as a small community have achieved. I just want to find a cure – especially for rhabdomyosarcoma but ultimately all childhood cancers.”

If you would like to get involved and support our childhood cancer research, please contact Nicola Shaw in the Development Team: call 020 8722 4227 or email Nicola.Shaw@icr.ac.uk.

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Watch Nicola's video and learn more about her work with our Family Charity Partners.