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 3 Charity news Including how 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. For families like Finley’s this would be very welcome. “With any surgery and Now nine, Finley attends mainstream school terrifying” any general anaesthetic there are risks,” and is doing well. But he is likely to need says Diane. “Anything that makes the further surgery in the future. surgery more effective and reduces the With Action funding, researchers hope to number of operations needed could spare children with craniosynostosis from have a huge impact on families.”

These are just some of the new research projects we’re funding thanks to your support. Find out more at action.org.uk/new-research

4 touchinglives Spring/summer 20142018 action.org.uk action.org.uk New research

Stopping the spread of scarlet fever

Scarlet fever is currently Sriskandan at Imperial College experiencing a worrying London, together with experts at Public Health England. This research comeback and the bacteria will help inform public health strategy that cause it can sometimes in the future. trigger more dangerous “Given the current magnitude of illnesses. New research aims scarlet fever outbreaks, it’s really to reduce the spread. important that we find out how we can control it better,” says Professor After decades of decline, scarlet fever Sriskandan. “We aim to build our infections hit a 50-year high in England understanding of how scarlet fever last year – the largest reported infects children and spreads so we spike in a century. Thanks to modern can identify the best ways to antibiotics, it is usually not serious and slow down transmission More than symptoms, including a blotchy rash, in future outbreaks. We sore throat and high temperature, hope that this will, in usually clear up within a week. turn, save children’s lives 19,000 children were But the strep A bacteria that cause the from more dangerous diagnosed with scarlet infection can have a darker side. In rare conditions caused by fever in England and cases they can trigger life-threatening the same bacteria.” Wales in 2016 illnesses such as pneumonia, meningitis, The team plan to identify test whether current hygiene toxic shock and sepsis. key attributes of the bacteria recommendations and treatment Action funding of more than £188,000 that help them to spread and find guidelines for schools and nurseries are is supporting an important programme out which antibiotics are the best at enough to limit the spread of scarlet of work led by Professor Shiranee slowing them down. They will also fever during an outbreak.

Exercise to help children with cerebral palsy

Daily physical activity is important Lack of physical activity can reduce for children with cerebral palsy. for healthy growth and development. children’s endurance levels and She says: “School-based activities enable But sadly, that’s not always easy muscle strength. It may also cause all children to benefit, whatever their for children with cerebral secondary conditions, such as background. Our new programme palsy – the commonest long-term pain, fatigue and involves children taking regular breaks childhood physical Almost osteoporosis. And children during lessons to stand up and join disability. are also more likely to structured physical activity sessions in become overweight and Children with 2,000 their classroom, with help if needed.” develop insulin resistance, cerebral palsy face babies born each which can lead to The research team will look at lifelong difficulties year in the UK have diabetes. It may even affect the effects on children’s academic with movement and cerebral palsy academic performance. performance, strength, mobility and coordination. While overall health and wellbeing using a problems vary from child Professor Helen Dawes, who range of tests. to child, many children with cerebral leads the Movement Science group palsy spend a lot of time sitting at Oxford Brookes University, is This project has been jointly funded down. They tend to be less active assessing the feasibility and benefits of with the Chartered Society of and less fit than other children. a school-based exercise programme Physiotherapy Charitable Trust.

These are just some of the new research projects we’re funding thanks to your support. Find out more at action.org.uk/new-research

action.org.uk touchingtouchingliveslives Spring/summerSpring/summer 20182014 5 New research

Giving children the best possible start

Children naturally develop at different rates but missed milestones can be an early sign of problems. Dr Samantha Johnson and her team are fine-tuning a questionnaire, which aims to make it easier to spot developmental delay and learning difficulties so children can get help sooner. Parents know their children best and will often notice if their little one doesn’t reach a developmental milestone as expected. Their child may seem late to walk or talk. Or they might notice differences in the way they play, learn, speak, act or move. But since all children develop differently, it can be hard for parents to know if professional help is needed. Dr Samantha Johnson, a psychologist and expert in child development from the University of Leicester, aims to help. “What happens in early childhood can affect a child’s health and wellbeing and researchers to identify whether throughout their whole life,” she says. a child’s development is delayed “What “That’s why it’s so important to check relative to this. happens children’s early development to identify The questionnaire takes just 10 to 15 those who need support.” minutes for parents to complete and in early less than 10 minutes to score. And it will Questionnaires completed by parents are be made available free of charge online, often used to spot children who might childhood so health professionals and researchers need extra help. With Action funding, worldwide can use it with parents of new research will see an existing can affect all young children. questionnaire, currently used a child’s to identify problems in Dr Johnson says: “It will Around children who were born provide a quick, inexpensive whole life” prematurely, adapted to and easy way to assess make it suitable for use one in 10 children’s development babies is diagnosed with all young children. early and identify those with developmental who may need support. The research team are using delay information from more than “We hope this will 6,000 questionnaires, completed ensure that those with on children born at full term, to developmental problems – even create new standardised scores. These just mild difficulties – can receive children did not have any birth-related timely intervention, at a critical point complications that are known to affect in their development, with the aim of development. So this will show what sort reducing the lifelong impact of those of scores young children, aged around two, difficulties and giving children the typically get and allow health professionals best possible start in life.” Dr Samantha Johnson

6 touchinglives Spring/summer 20172018 action.org.uk Remembering baby Fintan

The Heading family undiagnosed syndrome, which left him unable to fight NEC. are close to raising an incredible £10,000 through Determined to do something positive to remember their precious son, a Tribute Fund set up in the Annie and Paul discovered Action. name of their baby son. “We did a Google search and saw Through this special fund that Action was supporting research into NEC and thought this was they hope Fintan’s memory amazing. We hoped that we might can help other sick babies be able to help prevent another and children in the future. family going through what we went through,” says Annie. In their first year of fundraising, the It was a huge shock for parents “We set up a Tribute Fund to reflect family held a coffee morning. Last year Annie and Paul Heading when the love the whole family and our they set their sights higher – 175 feet instead of cuddling their newborn friends felt for Fintan. We thought it high, persuading family and friends to son he was whisked off to neonatal would be nice for everybody to see join them on a zip wire challenge over intensive care. Baby Fintan was born the fund growing and it has allowed Belfast’s River Lagan. in April 2015 and although he’d people to contribute who might find needed to be delivered four weeks “Our gorgeous baby boy gave us it difficult to support us in other ways. early, he weighed a healthy 6lb 5oz. so much joy, love and happiness in People feel so helpless. They want to 11 short days,” says Annie. “We feel “We didn’t know what lay ahead help ease things for us but they might privileged to have had the time that we for Fintan but believed he would find it difficult to know how to show did. We know not everybody gets to be ok,” says Annie. Initially the that they care.” have even that. doctors were mainly concerned Amazingly, almost £10,000 has now about his blood sugar levels. But “For us, the Tribute Fund means his been raised towards Fintan’s fund, then they began to suspect Fintan memory can continue to light up the which is a big focus for the family might have a genetic syndrome. lives of people in the future, especially during the toughest times around his “This was because of some of his babies and children who are affected by birthday and anniversary. “It gives us facial features and his central tone sickness and illnesses around the UK.” something to focus on and to pour was floppy,” explains Annie. “He our energy into,” says Paul. “And You can find out more also didn’t have a sucking reflex so it gives us a chance to talk about about our Tribute Funds at needed to be tube fed.” Fintan with people.” action.org.uk/tribute-funds Various tests were done to try and find answers but then things took a tragic turn for the worse. Fintan developed a condition called necrotising enterocolitis or NEC. This devastating bowel infection typically strikes the smallest or most vulnerable babies – those who have been born very prematurely or, like Fintan, those who are already poorly. Sadly the disease was very aggressive. “Doctors battled to save his life but he didn’t respond,” says Paul. “It was a terrible shock to everyone how quickly he went.” It’s believed that Fintan had an

action.org.uk touchinglives Spring/summer 2018 7 Born too soon a little boy’s battle to survive “Without research, we wouldn’t have medical advances, and Jack probably wouldn’t be here”

8 touchinglives Spring/summer 2018 When Jack was born more than three months early, his parents were told he had a fifty-fifty chance of surviving. After a traumatic start, he has made remarkable progress. But he continues to face health issues as he grows up, as his mum Jenny explains.

“Jack is inquisitive – very inquisitive!” says his proud mum Jenny. “He asks lots of questions and he’s a very smiley little boy.” Jack’s early arrival, in late 2013, was sudden and a terrible shock to Jenny and her husband Matthew. After a seemingly easy and problem-free pregnancy, Jenny started bleeding at 25 weeks and was rushed to hospital. “I wasn’t in active labour, and I was so naïve that I thought as soon as they stopped the bleeding, I’d just go home,” recalls Jenny. But two days later Jack was delivered by emergency caesarean section. “I was given a general anaesthetic and Matthew wasn’t allowed in the room with me. He thought he was going to lose me and our baby,” she says. Tiny baby Jack weighed just 1lb 15oz at birth and needed oxygen, help with his breathing and feeding tubes to survive. Jenny and Matthew knew their newborn son was extremely vulnerable and they were plunged into a world of tests and twice-daily Adrian Sherratt meetings with his medical team. Photo: Photo: “The doctors were always very cagey about Jack’s outcomes, because they didn’t want to give us false hope,” says Jenny. “Suddenly we had to try and take in all this new terminology

touchinglives Spring/summer 2018 9 so the canisters came too,” says Our research Jenny. “We were just so relieved to be home.” Every year, around 61,000 babies in the UK are born prematurely. Jack caught up with his weight in Babies like Jack, who have been his first year and is now a happy born extremely early, face the four-year-old. But he has experienced greatest risks and sadly more some developmental delay. “Physically than 1,000 die each year. he is behind, but he can walk, run and jump,” says Jenny. We believe that only by investing Jack spent four and a half months in hospital in research can the devastation Jack has chronic lung disease caused by premature birth and due to the oxygen he needed in pregnancy complications be about oxygen levels, blood gases and his early months and there are brain scans.” stopped. Working in partnership concerns about his eyes. He may with the charity Borne, we are Sadly Jack suffered from a collapsed also be affected by epilepsy due to now funding two new projects lung and brain bleeds during his the brain bleeds he suffered as a which aim to help reduce the first few days of life. Then, when he newborn baby. number of babies born too was six days old, he developed a But Jenny says: “We are so lucky to soon and give the best possible bloated tummy. Doctors feared he have him. There’s no stopping him!” outlook for affected families. had necrotising enterocolitis (NEC), a life-threatening infection of the Jenny believes passionately in the What causes premature bowel that very premature babies are value of research into premature birth is often unknown. especially vulnerable to. Jack needed birth and conditions like NEC which But evidence suggests that to be transferred to another hospital can devastate tiny lives. “Without infection is involved in four out for urgent treatment. But he was so research, we wouldn’t have medical of 10 women who experience small and so sick it took specialist advances, and Jack probably wouldn’t an unexpected early labour. staff four hours to stabilise him be here,” she says. At University College London, and transfer him from the hospital Jack’s little sister, Alice, was also born Professor Donald Peebles aims incubator to the transport incubator: prematurely in 2016 and has been to develop a new treatment “It was the most traumatic thing,” diagnosed with cerebral palsy. So that targets such infections. remembers Jenny. finding out what causes premature He explains: “Bacteria, usually Jack survived life-saving surgery in labour is especially important to found inside the mother’s the middle of the night, where it was Jenny. “Anything that helps identify vagina, can sometimes get into found that he did have NEC. During why women go into labour too the womb where the baby the operation he had a piece of his soon is vital,” she says. is growing. This is bad news, bowel removed. This was to be the as this infection can trigger first of seven operations during his inflammation that may cause first six months of life. premature birth and damage to the developing baby’s brain.” The months spent in hospital were a time of enormous Professor Peebles and his anxiety for Jenny and Matthew, team are testing a potential since doctors could give no new treatment that’s designed reassurance as to Jack’s to boost the body’s natural prognosis. “At one point defences against these infections. the medical staff said that if “Our hope is it could both they felt Jack wasn’t going reduce the numbers of to develop, they would premature births, as well as withdraw his support,” reduce the risk of brain damage Jenny says. and its long-lasting impact on children’s lives,” he says. But, thankfully, Jack recovered from each setback and after four Find out more about our and a half months he fight to stop the devastation was finally allowed caused by premature birth and home. “He was pregnancy complications still on oxygen, action.org.uk/fightback

10 touchinglives Spring/summer 2018 action.org.uk Your money in Action

A new treatment to fight neuroblastoma Around 100 young children a year are diagnosed with a cancer called neuroblastoma. Sadly some, like Felix, don’t survive. Research funded by Action has tested new drug combinations aimed at making treatment more effective, to try and save more lives.

Felix was just four years old when unaware of the gravity and just in children with the disease will doctors discovered a mass in his wanted to be at home, playing with happen within two years. his brother and sister. Tragically he lost abdomen. “Our life completely This research was funded together his fight, aged just six years old. changed that night,” says his dad, with Neuroblastoma UK. Matthew. The little boy was In 2014 Action awarded funding of diagnosed with high-risk, stage almost £180,000 to Professor Robert four neuroblastoma, a cancer that Mairs, of Glasgow’s Institute of Cancer starts in the nerve cells and can Sciences. He aimed to enhance spread rapidly. a treatment known as targeted Most affected children are very molecular radiotherapy. This approach young – less than five years old – sees radioactive drugs, which seek and and, sadly, high-risk neuroblastoma destroy cancer cells, injected into the can be very difficult to treat. Around bloodstream. It can be used to treat one third of children lose their lives cancers that have spread and even within five years of being diagnosed. destroy tumours that are too small to detect on scans. Felix endured two years of aggressive treatment, including The team investigated using additional chemotherapy, multiple operations, drugs that are designed to make radiotherapy and a stem cell cancer cells even more susceptible to transplant. “The toughest thing was radiation-induced damage. Two of when he was in pain and lost a lot these were found to work well. of weight,” says Matthew. “While This ‘holds promise as another We are now funding more research his twin brother was growing, Felix component in the arsenal into neuroblastoma. Find out more was shrinking.” for the treatment of high-risk and support our appeal at Throughout his illness Felix was neuroblastoma’ says Professor action.org.uk/cancer cheerful and upbeat. He was Mairs, who anticipates clinical trials

A test to predict risk of premature birth

Research funded by Action has can be detected in the blood and, very premature babies, but didn’t made important steps towards importantly, their levels have been receive special monitoring in their developing a blood test that could found to be different in women who first pregnancies because we had be used in early pregnancy to go on to develop cervical weakness no way of knowing they were at identify women who are at high – a known cause of premature birth. risk of early delivery. I hope this risk of going into labour too soon. If diagnosed early enough cervical work will translate into a more personalised approach for these Research Training Fellow weakness can be treated and women in the future.” Dr Joanna Cook has been pregnancy prolonged. So a blood investigating the role of naturally test used in early pregnancy would These promising results will now be occurring substances called allow doctors to identify and help tested in a larger group of women. microRNAs, which seem to be those women who are at risk. If successful it is hoped that a involved in controlling when a Dr Cook says: “In our clinic we often commercially available test would woman goes into labour. These see women who have already had be ready in around five years. action.org.uk touchinglives Spring/summer 2018 11 Our impact Helping children with dropped foot to walk more easily Dropped foot can be caused by cerebral palsy, multiple sclerosis, stoke or injury and makes walking difficult. Action funding has helped to refine a technology called functional electrical stimulation, developing it into an effective, wearable device that is now benefiting both children and adults in the UK.

Children with dropped foot are to contract, allowing us to move. Further funding allowed more unable to properly lift one or But if these signals are disrupted, improvements to be made and since both feet. They struggle to move movement becomes difficult or then the researchers have continued their ankle and toes upwards, impossible. FES involves wearing a to work on this technology. The which causes the front part of special device that uses low energy Odstock Dropped Foot Stimulator the foot to drop down, or drag. electrical pulses to mimic the natural (ODFS®) is now sold worldwide signals sent along the nerves. and is estimated to have benefited This can make walking difficult, 15,000 people in the UK alone. slow and tiring, with an The first Action grant allowed the increased risk of trips and falls. researchers to improve and test a It can severely limit mobility device they had already developed, “Funding from Action and affect a child’s confidence, known as the Odstock Dropped independence and quality of life. Foot Stimulator. Their new solution, was key. It was our tested on stroke patients, allowed Conditions such as cerebral palsy, main source of funding two muscles to be stimulated multiple sclerosis, stroke and some at once instead of just one. This in the late 1990s” inherited neurological diseases can was shown to have much greater cause dropped foot. It can also be Professor Ian Swain benefit, with improvements in caused by brain or spinal cord injury. walking continuing even when the How we’ve helped device was not in use – something From the mid-1990s, Action that hadn’t happened before. funding of £182,000 over seven years allowed researchers, led by Professor Ian Swain, to adapt and develop a technology called functional electrical stimulation (FES). FES had previously been used in laboratories and hospitals since the 1960s but the systems were too bulky and complex for use outside of these settings. Professor Swain and his team, based at Salisbury District Hospital, in Odstock, and the Universities of Surrey and Southampton, aimed to bring its benefits to many more people. FES uses specially timed electrical stimulation of certain muscles to help lift the foot when walking. Usually signals, or small electrical pulses, travel along our nerve cells and tell our muscles when Finn wearing his FES pads

12 touchinglives Spring/summer 2018 action.org.uk He also plays for the Football Association’s regional talent centre in the south east, in recognition of his skill and potential as a football player with cerebral palsy. Aware that there is potential for hundreds more children and teenagers to benefit from FES, Anthony says: “The fact that charities like Action are prepared to put money into this is fantastic. Without this research, Finn simply wouldn’t have the benefit of this technology. Finn with his mum Helen, dad Anthony and Dolly It’s absolutely about giving opportunities to kids, to make a While the device was first help him, they fought their local difference – a profound difference.” developed for adults, the team authority for funding. Finn now in Salisbury now run a dedicated attends the clinic in Salisbury twice children’s clinic. This is managed a year and has experienced real “It has been fantastic by one of the original researchers benefits from using his device. on the Action-funded work, Dr His dad, Anthony, says: “It has been for Finn with great Duncan Wood, and has treated fantastic, with great results. It makes children affected by cerebral results. It makes a a huge difference to his walking.” palsy, stroke and head injury. huge difference” Explaining how the system works, Children with dropped foot who Anthony says: “Finn wears a little Finn’s dad, Anthony use FES are able to walk faster, box – about the size of two match with less effort and fewer trips. But boxes – attached to his belt, and the most important benefits wires down his legs. These attach are associated with to sticky pads on his calves. quality of life. Over This system is wirelessly Dr Wood connected to a special reports young switch inside his right shoe.” patients saying 20,000 things like: “I FES drop foot The pads allow electrical can keep up stimulators have pulses to reach his with my friends” now been sold muscles. One pad lifts his or “my walking worldwide toes and the other turns looks more normal them outwards. The switch when I’m in town.” under Finn’s right heel controls the timing and strength of the Finn’s story pulses, which can be adapted Finn is 11 years old and has according to how he’s feeling. cerebral palsy affecting the right FES is helping Finn pursue side of his body – a condition his greatest passion in known as right-side hemiplegia. life: football. He plays His mum, Helen, has a background for Chelsea Football in nursing and since his condition Club under-12s team was diagnosed, at six months through the Chelsea old, she’s thrown herself into Foundation’s Disability researching every possible Inclusion Programme.

source of help. This led the Ben Rector Photos: family to find out about FES. Finn finds it hard to lift his right We have a proud history of funding research foot when walking and his parents that has improved the lives of children with were so convinced that FES could disabilities. With your help, this work continues.

action.org.uk touchinglives Spring/summer 2018 13

Fundraising news Cycling superstars help raise more than £1.5m

A host of cycling stars turned out to Dani Rowe MBE, and support our Champions of CycleSport Steven Burke MBE. dinner at the end of last year. And we Chris Boardman MBE said: “It has were thrilled to see the total amount been an absolute privilege to be raised over eight years of this glittering this event’s Ambassador and I could event hit the magic £1.5 million mark. not be more proud to see how it’s Held in London, supported by Garmin, grown. Action is a charity that I hold Maserati and BDO, the recent edition dear to my heart. My son George saw more than 750 guests rub was born prematurely and I know the shoulders with some of the nation’s concern that parents have for their greatest riders, including former World little ones’ health. I am truly delighted rivals Chris Boardman to hear how much has been raised to Action Ambassador Alex Dowsett MBE and . help fund vital research.” The date for this year’s Champions They were joined by 2016 Olympic Chris now hands over his of CycleSport event is Thursday 22 gold medallist Katie Archibald, plus Ambassador role to current road November. For details and table sales Yanto Barker, Rochelle Gilmour, racing pro Alex Dowsett. visit action.org.uk/champions

Our cycling season starts again in May. There are routes for everyone! See back cover for dates and sign up at action.org.uk/cycling Company champions give fantastic support

Convenience store chain One Stop is meant we exceeded our target, cycled and run, held quiz nights, celebrating a major milestone – raising raising almost £43,000. football tournaments, cake sales an amazing £250,000. and more. Their achievements have Celebrity supporter Davina McCall For one month every been led by their inspiring Group attended the BGC Charity Day year since 2012, Managing Director David Lench, who at Canary Wharf along with amazing branches across the has taken on a number of ambitious Aiden, one of our most inspiring UK have proudly personal challenges for the charity. young supporters. displayed Action We’re also very grateful for the collection boxes on The second Willmott Dixon continued support of Liberty their countertops. Classic saw over 150 staff and Specialty Markets, one of the clients on their bikes, raising £50,000 We’re excited to be starting a world’s largest specialty insurers. The for Action. They were joined by fundraising partnership with Airport company hosted a special reception former pro rider, now TV pundit, Parking and Hotels (APH). for key supporters at their London Yanto Barker. The company offers services at 26 HQ in the iconic Walkie Talkie building. UK airports and ports and will raise The annual Garmin Pro Ride saw They have also donated a significant money through a series of staff-based 800 cyclists join professional riders amount towards new research into challenges. Runners and cyclists will be from Madison Genesis, Movistar Crohn’s disease and brain cancer. collating their combined miles travelled Team, and Team Lampre Merida for throughout the year which will be a 50-mile spin in the New Forest. matched in real money by the company. Sky News’ Dermot Murnaghan hosted live interviews and Garmin The Big Give Christmas demonstrated their new technology Challenge was a big success at the on stage. The event raised £49,000. end of 2017. Thanks to everyone who donated, helping us fund vital research Arun Estates have raised well into devastating juvenile Batten disease. over £100,000 for Action over the The generosity of our supporters last six years. Staff have walked,

14 touchinglives Spring/summer 2018 action.org.uk

Fundraising news Running for a reason

Why husband and wife Jim and Jeanetta Darrah took on the new London Landmarks Half Marathon.

As this issue of Touching Lives went We know not everyone is so to press Jim and Jeanetta Darrah, lucky which is why we appreciate from Suffolk, were, quite literally, the invaluable work Action does.” pounding through the streets of Jim and Jeanetta, 53, have the capital and hopefully enjoying supported Action for 10 the sight of an iconic landmark years and Jeanetta says she’d or two along the way! London’s encourage anyone to sign up newest, closed-road, running event for a future event: “Look around took place on Sunday 25 March, you; do you know a child or with 10 runners pulling on their family suffering from illness or Action vests to take part. fearing for the future due to Speaking about the couple’s the unknown? Do something, motivation to run, Jim, 51, said: “Our however small, to help make a daughter Abby was born very, very difference,” she says. poorly and to be honest we were worried she would not survive. Team Action runners made a big difference in 2017, raising “We have a photo of her in more than £108,000 – that’s the hospital bed with her very an amazing £72 per mile! If worried-looking older sister Zoe you want to run for a reason, holding her hand. As a parent you please join us. We have places just feel so helpless when your in various events across a “Our Abby is now a healthy little ones are sick. range of distances – from the “Fortunately our Abby is now a London Marathon to the Mud 26-year-old who has even healthy 26-year-old woman who Monsters Run. Find out more has even run marathons herself. at action.org.uk/running run marathons herself”

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Vincent House, Horsham, West Sussex RH12 2DP

Design elements Repeating pattern Challenge events 2018

Running Virgin London Marathon 22 April Vitality London 10,000 28 May Mud Monsters Run West Sussex, 3 June Cycling RIDE100 Series: Castle Ride 100 Kent, 13 May Suffolk Sunrise 100 20 May Davina’s Big Sussex Bike Ride 10 June Trossachs Ton Scotland, 17 June Conquer the Mountain series York 100 19 August Grab your hiking boots and join Essex 100 2 September us as we summit some of Britain’s Prudential RideLondon-Surrey 29 July highest peaks this summer. We have three events to choose Cycle Tours from – Snowdon, Ben Nevis or our Maratona dles Dolomites 1 July Yorkshire 3 Peaks in the beautiful London to Paris Tour Edition 25 to 29 July Pennine range. Team Challenges You can come solo or bring a team – these challenges are NEW Scumrun Charity Drive 17 to 21 May perfect for anyone looking to achieve Trek the Night Cotswold Way 9 to 10 June a specific time or tackling it alone Trek the Night South Downs Way 14 to 15 July for the very first time with the full Race the Sun Brecon Beacons 23 June support of our crew along the way. Race the Sun Isle of Wight 30 June Find out more and register at Race the Sun Lake District 1 September action.org.uk/mountain_series Mountain Series one-day challenges Snowdon 9 June You can register for an event on our 17 June Yorkshire 3 Peaks website, give us a call or send an email: Ben Nevis 8 September action.org.uk/events T 01403 327444 E [email protected]

The best tea break you’ll have all year! Join us for our easiest, tastiest fundraising event on Thursday 28 June. All you need to do is get a group of friends or work colleagues together and place your order online. Our Action Cream Teas boxes are filled with everything you need for a perfect tea-break treat, delivered direct to your door. Best of all, every bite Cream enjoyed helps us raise vital funds to save Exclusive reader offer Teas and change children’s lives. Complete the word search overleaf for the Order at chance to win a delicious Action Cream Tea action.org.uk/cream-teas for you and five friends! action.org.uk touchinglives Spring/summer 2018 16