Touching Lives

September 2014

Welcome to our Autumn/winter issue of Touching Lives – where you can read about our work helping sick babies and children and the fundraising and support that makes vital research possible.

Isabella, who lights up our front cover, has a fighting spirit, a warm heart – and a baby brother to play with. But tragically, parents Laura and Ryan lost her identical twin sister Grace at birth through Twin-twin transfusion syndrome. In this issue, we discuss a new treatment being developed that Action is funding, and honour the inspirational bravery of this young family.

You can find out how research that Action funded back in the 1970s means that children like Emma, aged two, are now being saved from lifelong learning disability. New research also includes work to help children like Tom, six, who has Duchenne muscular dystrophy. A new medicine being tested by researchers at Newcastle University could slow down the progression of this devastating, fatal disease. We talked to Tom’s mum Rebecca, who explains what hope means to her family.

Our celebrity supporters have been busy again: TV chef Lesley Waters fronted this year’s Action Cream Teas in a box fundraiser; our cycling events were sprinkled with stardust as big names from the worlds of comedy, TV and sport lent us their support; and in November our friendly, furry mascot Paddington™ stars in his very
own movie! 

Of course, you don’t need to be famous (or furry) to get involved and make a difference. Why not lend a hand as a community volunteer? Volunteer Development Manager Jane Charlton, who's based at our head office in Sussex, offers an insight into volunteering for Action.

It won’t be long until the leaves start to fall, the air cools and thoughts turn to the festive season. Ordering your Christmas cards from Action is a great way to support our work, so do check out this year's wonderful, contemporary designs. Every single penny raised comes to Action, helping us to help sick babies and children, and that’s something to celebrate at any time of year.

April 2014

Dear supporter,

Welcome to our spring/summer issue of Touching Lives, packed full of our latest research and fundraising news.

If you have children or grandchildren then I’m sure you’ll remember seeing those first ultrasound scan pictures of a new baby. But sometimes a clearer image is needed, especially if a problem is suspected. In this issue you can find out how Action funding has helped doctors develop advanced fetal MRI scanning techniques. These can be life-saving for babies at risk.

Our cover feature is on brothers Alex and Daniel, who have the rare disease Smith-Lemli-Opitz syndrome. Their early years were especially difficult as their mum, Victoria, didn’t know why they were suffering so many health problems.

We also have updates on new research we’re funding – none of which would be possible without you, our dedicated supporters. This includes work to help children with brain cancer, like 11-year-old Iona who was diagnosed with a tumour when she was just five.

As we head into summer, now is the perfect time to get active. Please read the heart-felt story of how one family used running for Action to channel their grief at the loss of their baby son into something positive. We hope their inspiring story might motivate you to take part in one of our many challenge events.

Our celebrity friends have also been busy. We've got all the latest news on what they’ve been up to for Action and find out more about our fantastic summer Cream Teas fundraiser, which is this year backed by TV chef Lesley Waters.

Finally, this issue also includes a reader survey. Your views are important to us and we are always keen to know what you think, so I hope you’ll be able to spare a few minutes to complete this. You can complete the survey online here.

Best wishes for a happy Easter and a great summer!

October 2013

Dear supporter

Welcome to our autumn issue of Touching Lives.

As you’ll see as you leaf through the following pages, we’ve refreshed the design of this issue. Let us know what you think of our new look. We hope you like it!

We’re very fortunate as a charity to have so many committed celebrity supporters, such as TV stars Davina McCall, Dr Dawn Harper and Phil Spencer to name a few. See page 3 to find out what they’ve been doing for Action this year.

Our cover feature is about Emma Thornton, who is 11 years old. As a baby and toddler Emma loved being active but at age six she started having problems with her mobility. It was a terrible shock when Emma was diagnosed with the painful illness Perthes’ disease that affects hip joints. Turn to page 9 to read about how her family live with Emma’s condition.

We have a track record in funding research into mobility. Turn to page 4 to read how 4,000 children a year are benefiting from research we funded to help develop the Oxford Foot Model, which is used to assess foot deformity and walking problems. Find out how Grace is living with the serious, incurable condition Rett syndrome on page 6. Updates on new research can be found on pages 11 to 13.

We’ve had a fantastic year at Action and a glorious summer but the nights are drawing in. Make your loved-ones happy this Christmas with a personalised Paddington T-shirt on page 14, or look at our back cover for details of our exciting new range of cards.

Thank you for supporting Action – you are helping to fund vital research for babies, children and young people.

Wishing you all a peaceful autumn and winter.

 

March 2013

Welcome to this spring/summer edition of Touching Lives, which we hope you’ll enjoy. We’ve put together a great issue for you, packed with lots of updates on our work.

If, like us, you’re glad to see the back of winter and are keen to get out and about in the countryside, why not organise a fundraising Walk for Tiny Lives? Turn to page 3 in the PDF to find out how.

You can read about young Jack Baddams, who was born prematurely and has Down syndrome, severe learning difficulties and is registered partially sighted. Jack also went on to develop a breathing disorder which disrupted his and his family’s life. Read his heartwarming story and learn about the research funded by Action into routine screening for children at risk of breathing problems like Jack’s.

This year we’re proud to celebrate the 40th anniversary of our prestigious Research Training Fellowship scheme – in this issue read about two of our recent fellows. The latest research we’re funding includes projects tackling sickle cell disease and kidney failure, thyroid screening, plus a new, painless way to monitor therapeutic drug levels in babies.

As you may know, this magazine is available in print and also online at action.org.uk/ about_us/publications. If you would prefer to receive a link to the online version of the magazine instead of receiving a printed copy in the post, please email your request to me at editor@action.org.uk
 

October 2012

Welcome to this autumn/winter edition of Touching Lives, which is packed with articles on our latest research work and fundraising.

On pages 4 to 5 you can read our moving cover story about baby Scarlett, who was born with a rare brain disorder that means she reacts in an exaggerated way when startled. Scarlett suffered her first of many seizures just a few hours after birth and spent her first five weeks of life in hospital. Read about how her family has learned to live with startle disease – and how your support helps more babies like her.

2012 has been a year of celebrations for us as we mark our 60th anniversary. Our spring issue included an article on how the charity was set up in 1952 by Duncan Guthrie to fight the deadly virus polio. For this issue, we’re highlighting some of our other successes, so turn to pages 10–12 to read about some of the amazing medical breakthroughs our supporters have helped fund through the years.

See pages 6 to 9 for a preview of the most recent research projects we have been funding, including helping to improve a diabetes vaccine, seizures in babies and vitamin D deficiency.