When Victoria’s second child Alex was born, she instinctively knew there was something wrong. His spine was curved and as a baby he barely slept, suffered feeding problems and was sick every few hours. His brother Daniel arrived 17 months later, needing surgery to repair a hole in his heart. He too then suffered similar problems to Alex. It was three years before the boys were diagnosed with Smith-Lemli-Opitz syndrome (SLOS), a rare metabolic disorder. This is the family’s story.
Action Medical Research has been funding research looking at babies’ development in the womb for more than 40 years. Recent funding helped a London team to develop specialised MRI scanning techniques, giving clearer pictures of babies who may be at serious risk.
We’re very excited that our Action cream teas fundraiser will this year be fronted by celebrity chef Lesley Waters. Well-known for her regular television appearances on Ready Steady Cook, Great Food Live and This Morning, super busy Lesley is also a former head tutor of Leith’s School of Food & Wine, author of several cookery books, a qualified fitness instructor and a mother of two!
Davina McCall hosted her Dine with Davina lunch in November and will be back on her bike for her Davina’s DIVA Sussex in May. TV property expert Phil Spencer will be cycling the RideLondon-Surrey 100 in August. And more...
For the first 18 months of her life, Kylie suffered recurrent high temperatures, infections and breathing problems. At two years old she was finally diagnosed with primary ciliary dyskinesia (PCD), a debilitating inherited illness that particularly affects the airways. Action funding awarded in 2010 allowed a research team to hunt for genes that cause PCD.
Research funded by Action has shown exciting potential for a new way to treat retinopathy of prematurity (ROP), a major cause of vision loss and blindness in young children.
Thank you to all those who’ve been taking part in our new Weekly Lottery. For just £1 per entry you can win great cash prizes every week. It’s a fun and easy way to support us.
“First ever draw for the Action Weekly Lottery and I won! Complete surprise! I joined as I have two children, and Action is a charity that funds research to help sick children. Not only does the money go to a good cause but, you never know, you might be lucky enough to win!”
We are always extremely grateful to supporters who remember Action with a gift in their will. Last year we received some exceptionally generous legacies and were able to fund more medical research as a result.
Iona was just five years old when she was diagnosed with a brain tumour. She went through 10 hours of surgery which left her with some brain damage and without the ability to produce important hormones.
Children who have an autism spectrum condition (ASC) are thought to see things differently to other children. This can cause them a great deal of stress and make communication and social interaction difficult. Researchers believe that glasses with coloured lenses might allow these children to see and perceive things more clearly, helping them to improve their social skills.
Funding from Action is helping an expert team at London’s Institute of Child Health to develop a potential new treatment for a devastating rare condition that affects boys.
Up to 15 per cent of identical twins develop a serious condition in the womb called twin-twin transfusion syndrome (TTTS). Action funding is allowing doctors to investigate if a powerful form of ultrasound could be used to more safely treat babies while they are still in the womb.
A series of glitzy fundraising events saw Action round off 2013 in superb style, with some fantastic amounts of money being raised.
Give as you Live is a free app that allows you to shop online and raise money for Action at the same time!
James and Jenny Halse were devastated when their son Elijah died at just 37 days old. Their close-knit community rallied round to support them, culminating in more than 50 people pulling on their trainers and joining them to run and raise vital funds for Action.