Spring/summer 2018 touching livesThe Action Medical Research magazine Born too soon – a little boy’s battle to survive Read Jack’s story Plus Helping children like Finn to walk more easily Stopping the spread of scarlet fever From the editor Dear supporter, Contents Welcome to your latest issue of Touching Lives. I hope you’ll enjoy finding out more about the life-changing research you’re helping to make possible. Premature birth is a big focus for us at the moment and our cover star 4 Jack’s story really highlights why tackling it is so important. In many cases, like Jack’s, doctors simply don’t know why labour started so early. New research is looking at the role infection can play as a trigger. Plus we have an update on work that has now taken doctors a step closer to developing a blood test to identify women 8 12 who have an increased risk of having their baby too soon. Our Research Training Fellowship scheme supports some of the Charity news Including how 3 most promising doctors and researchers early in their careers. Action funding kick-started a hugely Many of these people go on to achieve big things, like Manju Kurian successful career in medical research to help children who you can read about on page 3. The scheme is 45 years old this year and I hope you’ll feel proud that your support today is New research Recently awarded helping develop leaders of the future in children’s research. 4 grants to help children with Of course, we continue to need your help to fund more medical craniosynostosis and cerebral palsy, plus stop the spread of scarlet fever breakthroughs. And our summer Action Cream Teas fundraiser is a fun and easy way to do this – we’d love you to get together with Tribute funds How the Heading friends or colleagues and join us for a guilt-free tea-break treat! 7 family have raised almost £10,000 in Thank you, as always, for your support. memory of baby Fintan Cover story Jack had a traumatic 8 start in life after being born very early. Read his story and about Clare Airey, Editor latest research aimed at reducing premature birth Your money in action Keeping in touch 11 Progress made in research previously Everything we do is only possible with the amazing support of people like funded with your support you. We want to keep you updated on the vital research you are making Our impact How Action funding happen, as well as ways you could get involved with Action in the future. 12 helped develop a wearable device As you may have heard, new data protection regulation comes into force that’s now helping children and adults this May. So we wanted to take the opportunity to set out how we with dropped foot handle your personal information and what it means for you. Fundraising news Including You can read more about how we manage your data in our privacy 14 action.org.uk/privacy-policy support from champion cyclists and policy and supporter promise corporate friends Challenge events Find out what’s Action Medical Research is a Please send all We are keen to share, but you 16 on this year and enter our fabulous UK-wide charity saving and communications to: must ask first! If you see an article Action Cream Teas competition changing children’s lives through The Editor, Touching Lives, or a picture you would like to copy medical research. Action Medical Research, or reproduce for use elsewhere, Vincent House, Horsham, please contact the editor. Touching Lives is Action West Sussex RH12 2DP Medical Research’s magazine © Action Medical Research 2018 for supporters. T 01403 327425 Action Medical Research is a registered charity: Editor: Clare Airey E [email protected] action.org.uk England and Wales no. 208701; Front cover photo: Adrian Sherratt f /actionmedres Scotland no. SC039284 Print: Foundry Press t @actionmedres © P&Co. Ltd./SC 2018 Design: Action design team @actionmedres i Touching Lives is also available to download at action.org.uk 2 touchinglives Spring/summer 2018 action.org.uk Charity news Contents Our award-winning researcher Paediatric neurologist Dr Manju Kurian was awarded one of our Research Training Fellowships back in 2008. This kick-started her career in medical research and we’ve been delighted to see how successful she’s since become. She’s recently been the recipient of a string of prestigious awards in recognition of her ongoing work, including a L’Oreal UNESCO Women in Science award in 2017. Ten years ago Action funding allowed Dr Kurian to embark on her first piece of research, investigating the genetic basis of two devastating, life-limiting conditions that affect the development of the brain and Dr Manju Kurian in the lab nervous system in very young children. Her research led to the discovery includes two current Action Research of one gene linked to early onset Training Fellows, continue to carry out epilepsy and one gene linked to a groundbreaking work, investigating a Parkinson-like movement disorder. range of childhood conditions. She also developed genetic tests for patients, meaning families could Dr Kurian says: “Without Action, I be given an accurate diagnosis and wouldn’t be here – thank you!” answers where previously they had Loyal fundraiser wins had none. Our Research Training Fellowship top prize! scheme has been running for 45 years. Building on this success, Dr Kurian It supports the most promising doctors Congratulations to Petronella has gone on to establish her own and researchers early in their careers, Keeling, founder member of our new research group at the Great training and developing future leaders Spalding Committee, who won Ormond Street Institute of Child in children’s research – people like Dr £500 in our Weekly Lottery. Health. She and her team, which now Kurian who go on to achieve big things. For just £1 a week you can have the chance to win cash prizes every week. It’s easy to Remembering Heinz Wolff play – you can enter online at action.org.uk/weeklylottery We were sad to learn that groundbreaking ‘Tools for Living’ Terms and conditions apply. Professor Heinz Wolff, best known programme. This saw the invention for presenting the popular BBC of a succession of devices to help “After 50 years of supporting TV show The Great Egg Race in improve the daily lives of disabled Action, I believe more than ever that the1980s, died at the end of 2017. and elderly people. the conditions the researchers aim to address are really worth fundraising Away from the small screen, Today, the Institute Professor Wolff set up the Institute for. Playing the lottery is a great is also involved way to help fund this vital research of Bioengineering at Brunel in biomedical University after receiving funding and win big prizes. I was delighted to engineering work, learn of my win!” from Action back in 1983. such as developing Two further grants, totalling more smart tools for Petronella Keeling, than £400,000, allowed his team surgery, implants Action Weekly Lottery winner at the Institute to develop the and sensing systems. action.org.uk touchinglives Spring/summer 2018 3 New research Improving major head surgery for young children At just 10 months old Finley had his first major operation to rebuild his skull. With Action funding, specialists are testing a new treatment approach which could improve surgery in the future for children like him. Finley was born with Apert syndrome – a rare condition that causes a range of health problems including craniosynostosis which affects the skull. In craniosynostosis the plates of the skull fuse together too early, while the baby is still in the womb. The head shape is distorted and, as the child grows, there is restricted room for the brain. This can lead to pressure within the skull and the need for major surgery. Finley with his big sister before his first operation Craniosynostosis can occur with no known cause or, like Finley’s, be linked to a genetic condition. repeat operations and make less invasive In Apert syndrome, it is especially complex procedures work better. and Finley has experienced hearing, sight and breathing problems, and issues with his jaw. Lead researcher Dr Dagan Jenkins, at the UCL Great Ormond Street Institute of When he was just 10 months old, surgeons Child Health, says: “While current surgical painstakingly dismantled and reshaped Finley’s procedures are very effective, they can skull, creating a new forehead. Before this, his be complicated and require many hours eye sockets were so shallow that he under general anaesthetic.” couldn’t close his eyes. The team have identified “We had to place our child in Around a drug – already approved somebody else’s hands. It was to treat other conditions – terrifying,” says Diane. “But if which could be helpful. Finley had been left to develop “We had pressure on his brain, it 350 “We hope that applying this would have affected all of his children are born drug to the site of surgery to place development. You are between with craniosynostosis will improve the effectiveness our child in a rock and a hard place.” each year in of less invasive procedures the UK without the need for follow-up Further surgery when Finley was somebody operations – meaning that affected four was particularly traumatic: “He was babies can look forward to a more in a lot of pain and kept saying ‘help me, help else’s hands. typical childhood,” says Dr Jenkins. me Mummy’. It was the hardest time of our It was lives as parents,” says Diane.