Touching Lives - March 2011

When five-year-old Jack Morley swoops into the room with his red wellies on announcing he wants to be a fireman, mum Lisa smiles with pride. Jack is already her little hero and she feels lucky to have him.

Juvenile dermatomyositis (JDM) can strike children at any age leaving them with pain, fatigue, rashes and muscle aches. Treatment, while intensive and prolonged, can help, but is not always effective. If untreated, this rare disease can make children so weak they are unable to do everyday activities such as running, walking or playing sports. The most severely affected can lose their lives.

Over 10,000 babies are born very prematurely – more than eight weeks early – each year in the UK. These children are much more likely to have special educational needs compared with those born at full term. This not only affects academic achievement but employment potential. Problems with mathematics are especially common and considered more of a hindrance in adulthood than poor reading skills.

Primary ciliary dyskinesia (PCD) symptoms often begin soon after birth, but the illness sometimes goes undiagnosed or is mistaken for conditions with similar symptons. Even when suspected, diagnosis is a complicated and unpleasant experience for a child. 

Epilepsy affects about one in every 242 children in the UK. The disorder of the nervous system can cause recurring seizures, which disrupt the normal message exchange between brain cells.

Worldwide, almost a million under-fives die each year because they have been starved of oxygen around the time of birth. Those who do survive ‘birth asphyxia’ can have learning, memory and behavioural problems at school, and long-term disabilities.

Children born very early with a low birth weight are at high risk of developing retinopathy of prematurity (ROP), which is a major cause of vision loss and blindness. Advances in neonatal care mean more premature babies are surviving these days, so there has been a resurgence of this disease. 

A doctor working with blind and partially sighted babies at Great Ormond Street Hospital is determined to tackle childhood blindness. Action Medical Research awarded her a fellowship – with help from a generous legacy – for a two-year study.

At Action, we are keen to work with other organisations to make more of a difference to babies’ and children’s lives. That’s why we are pleased to be working with the Engineering and Physical Sciences Research Council on a four-year project. 

It is a place at the forefront of scientific advances and its research institutions are very well respected. Scotland is where Action Medical Research has invested over £6 million in more than 70 projects during the last 30 years alone. Here we look back at what your support has helped to achieve in Aberdeen, Dundee, Edinburgh, Glasgow and St Andrews.

Two friends are cycling from Canada to Mexico to raise money for a tribute fund. Lee Collier and Jay Hookins will pedal 1,900 miles from Blaine on the Canadian border down the Pacific coast of America to the Mexican border. They aim to complete the route in just 14 days in August.

Some of the very best scientists working in the UK told their inspiring stories to an audience of Action Medical Research supporters at the House of Lords in September. Professor David Edwards, a pioneer in the development of treatments for newborn babies with brain damage, was one of the esteemed speakers at the reception.

Funky festival boots, green gardening wellies or trusty winter walkers are all suitable footwear for Action’s annual initiative Wellies to Work day. It’s a great fundraiser and easy to join in: just encourage your colleagues to don their favourite boots on 16 September and collect £2 from each welly-wearer.

The inaugural Independent London2Brighton ride was a huge success raising about £25,000 for Action. Almost 300 riders braved harsh weather to complete the 56-mile route last September.

Did you know you can recycle your car free of charge and help Action Medical Research at the same time?