12 April 2013

Action in Scotland: wildlife, lunches, challenges and new research

Once again, it’s all happening this year for Action in Scotland so here’s an update for you. Just last month wildlife television presenter Hayden Turner joined more than 300 guests at the annual Aberdeen Ladies' Lunch. The event raised more than £9,000 for the children’s charity. 

The Marcliffe Hotel and Spa was the venue for the event on Thursday 14 March. Hayden Turner, a former zookeeper at Taronga Zoo in Sydney, has hosted programmes on National Geographic and the Discovery Channel, reporting from some of the wildest and most scenic places on earth. Hayden spoke at the Ladies’ Lunch about his personal connection to the charity and his family’s experience of pregnancy complications and premature birth, as well as his safari adventures across the globe. 

By all accounts the day was a success and much enjoyed by all. Janet Balcombe, Community Fundraising Manager for Action Medical Research Scotland, says: “We had a wonderful afternoon and are already planning for next year’s event. Hayden is a fabulous ambassador for the charity, sharing his personal experience of why medical research is so important. We hope you will join us in 2014 and help us continue to raise money for our important work.” 

The next Aberdeen Ladies’ Lunch will take place on 13 March 2014. If you would like further information email jbalcombe@action.org.uk or call 01505 864334.

Action in Scotland research projects 
Action is currently funding a project into obesity in children based at the University of Aberdeen. Other medical research at the University of Edinburgh is focused on two projects: one of which has developed an eyesight device that could improve diagnosis and management of brain tumours and other serious illness in children. The other Action funded project is researching whether MRI scans could help detect growth restriction of babies in the womb, which could help prevent premature or stillbirth. 

New research: multiple sclerosis in children 
New for 2013, is research looking at multiple sclerosis (MS) and what causes damage and destruction of the nervous system. The research is being led by Professor Christopher Linington from the University of Glasgow. Professor Linington’s work could lead to badly needed new treatments for people who have multiple sclerosis. 

Estimates suggests up to 10 per cent of people with MS experience the first symptoms of the condition in childhood: tiredness, dizziness, problems with their sight, balance, memory and concentration. Damage to the nervous system causes MS and the symptoms, the same as adults with MS, can cause distress and disrupt school and family life. 

There is no cure for MS, no way of predicting how a child will be in one year, in five, or 10 years’ time, and no way of knowing how they will respond to treatment. At first symptoms of MS that a child suffers may come and go but, as time goes on, they will develop permanent and devastating disabilities. 

Professor Linington explains: “Although we know that children with MS have damage to nerves within the brain and spinal cord, we know very little about exactly how, or why, this damage occurs. We are trying to find out more.” Other evidence suggests that certain antibodies in the blood of children with MS ’attack’ their nerves. The damage caused by this process may influence how severe their MS is and how quickly it progresses. Professor Linnington suspects this is the case and if his research proves it, then treatments that have already been used to tackle problem antibodies in other illnesses might benefit some children with MS. 

Helping children like Rachel 

Rachel Courtney experienced her first symptoms of MS when she was just 12 years old. She started to feel very, very tired one day. The following day she woke up with a ‘wonky’ left eye which lasted for about a week. Three months later Rachel experienced pins and needles down her left side. 

Almost a year after her eye had gone funny, Rachel’s body went numb from the armpits down. She was terrified. “I didn’t feel right – my legs were rubbery and wouldn’t move. I couldn’t feel my body. Mum called an ambulance,” she recalled. In hospital, Rachel had a series of blood tests, a lumber puncture and an MRI scan. The results showed that she had MS. It was just days before her 14th birthday. 

At the time Rachel said: “It’s more difficult to fit in at school when you keep missing it. I felt strange and alone and didn’t want to go because people didn’t understand what I was going through. For a long time I stopped going out and spent more time with my family. I’ve had to make new friends.” 

With her balance and co-ordination affected, Rachel has had to give up hobbies she previously enjoyed, such as karate and kick boxing, but she still goes swimming. “Some days I’m happy and don’t have a care in the world, but on others I feel like I am all alone. I’m scared of falling over – you can’t see that my balance and my eyes aren’t working properly. With the help of my nurse, Chris, and my family I can take my treatment and stay positive. My mum says they are making a cure and I just have to wait. So I'm waiting.” 

You can watch a slide show created by Rachel herself about what life’s like for her with MS: http://youtu.be/gyhcjX_53Ms 

Get involved with Action in Scotland 
Whether you are a cycling fanatic, you are new to fitness, you fancy the ultimate walking challenge or you just want to have fun and raise funds for Action, there is something for you to get involved with! 

For more details about our research, events and how you can get involved with Action Medical Research in Scotland, please contact: Janet Balcombe jbalcombe@action.org.uk or Cecilia Cooper ccooper@action.org.uk

Or take a look to get involved with Action in Scotland.


22 January 2013

Action DIVA challenge continues – today is Training Tips Tuesday!



Get involved and help us spread the word to help sick babies & children. Today is Training Tips Tuesday. A new recruit to one of our women only Action DIVA bike rides has posted to our discussion board. Take a look at her tips for training for the ride, it may inspire you to get fit in 2013 even take on the Action DIVA!

If you’re already a fitness fanatic, or have some good tips to share – please leave your comments. We are eager to hear from you.

And don’t forget - share, like or comment on all five days’ updates and you could be in with the chance of winning a pair of tickets to our Dine with Davina event in  November – drinks reception, three course lunch with wine, auctions, prizes, entertainment and meet Davina! And if you have a Twitter account and re-tweet daily you have double the chance to win.



21 January 2013

Davina McCall launches social media week: take the Action DIVA challenge

TV’s Davina McCall is launching the UK children’s charity Action Medical Research social media week (21-25 January 2013). The Action DIVA challenge week will cover the charity’s women only bike rides, including fitness tips, motivation, inspiring stories and great prizes! 


More women than ever are getting hooked on road cycling as one of the best ways to get fit and stay in shape. Action DIVA is a cycle ride just for the girls and Davina wants as many as possible to join her. There are three routes to choose from – so whatever shape, size or cycling ability, this is a ride for every woman.

Women on the ride will be raising vital funds for Action Medical Research. Despite enormous progress in medicine, all around the UK today there are hundreds of thousands of sick and disabled children who need your help – children like Joshua  born 15 weeks early and who suffered from a life-threatening bowel condition called nectrotising enterocolitis. Through medical research we can help save and change the lives of children like Joshua.



Davina says: “What better way to motivate yourself to get and stay fit than to sign up for this brilliant bike ride. By doing so, you lovely ladies will be able to raise some dosh for the most amazing charity.”

19 December 2012

New shorter route for (most of) the RIDE100 series

As well as our original 60-mile and 100-mile routes, most of our RIDE100 series bike rides now include a shorter route between 30 and 45 miles.

Due to all the rides being different lengths we have simplified the naming of the routes to:
  • Cool - A new shorter route of 30-45 miles
  • Classic - Routes range from 55-72 miles
  • Champion - The longest of the three routes usually 100 miles.
 The Action DIVA rides also have new shorter routes:
  • Cool - A new shorter route of 15-20 miles
  • Classic - Routes range from 30-35 miles
  • Champion - The longest of the three routes between 60-70 miles.

28 November 2012

Save the date...

10am Thursday 6 December

The Candis Big Give Christmas Challenge

Rachel’s life was turned upside down when she was diagnosed
with MS when just 14 years old
The Candis Big Give Christmas Challenge kicks off on Thursday this week – please don’t forget to put the date in your diary and have your donation doubled!

Action Medical Research is pleased to have been chosen as one of the charities to benefit from The Christmas Challenge for the second time.

The Challenge offers you the opportunity to have your gift doubled if you donate online at the Big Give website between 6-8 December from 10am each day – remember its first come first matched!

We are aiming to raise £12,000 to research MS in childhood, which will then be doubled up to £24,000 - but we need your help to achieve this.

To find out more about the Big Give and how the challenge works, please visit the challenge page on our website, or email the fundraising team.

Your gift could make a real difference.

Help children like Joshua with a precious gift this Christmas

"Joshua is looking forward to riding
his first bike this Christmas and eating
Christmas dinner."
Joshua May was born 15 weeks too early. He survived the birth, unlike his twin Harry who died at 20 hours old.

But Joshua then became dangerously ill at just eight days old. Doctors thought it might be necrotising enterocolitis (NEC), but couldn’t be sure. This serious bowel disorder affects around 3,000 babies every year – and because it is difficult to detect up to 35 per cent of these babies die.

Every moment Joshua’s diagnosis was delayed meant a delay in receiving the right treatment. As Joshua’s parent’s watched him suffer, they couldn’t bear the thought of losing their second son.

Action Medical Research is determined that situations like this must change.

But we urgently need your help. A gift of £25 from you this Christmas could make a real difference.
Thankfully Joshua survived and will be enjoying his fourth Christmas with his parents this year. You could help us fund researchers to find the answers that could help save babies’ lives and end the suffering of families like the Mays.

Thank you and Happy Christmas.

Champions of CycleSport celebrates a golden year for cycling

What a fantastic turnout we had at our third annual cycling event, Champions of CycleSport Dinner in London last Thursday. Supported by UK’s No.1 online cycle and tri-sport retailer, Wiggle it certainly was a night to remember as our 650 guests were joined by some of the biggest names in cycling - Chris Boardman MBE, Dave Brailsford CBE, Joanna Rowsell, Rochelle Gilmore, Jonathan Tiernan-Locke, Jody Cundy and Rob Hayles.

Guests celebrated a golden year of cycling with the chance to mingle with their heroes and the event raised an incredible £180,000 which will help fund vital medical research for sick babies and children. Children like:
  • Katie, who was born two months early and needed resuscitating at birth
  • Cieran, who was left with deafness, epilepsy and cerebral palsy because of meningitis
  • Jack who was diagnosed with a brain tumour at just 14 months old.
Sky TV’s Dermot Murnaghan, also a keen cyclist who’s taken part in several of our bike rides, took time out of his busy schedule to interview the cycling champions. Joanna Rowsell, our Cycling Ambassador, said: “What a great year for cycling! The Champions of CycleSport Dinner was a true celebration of this. I’m really excited to be Cycling Ambassador for such a worthwhile charity and one that is so passionate about cycling.”

Joanna Rowsell
 Read the full story of 'Champions of CycleSport celebrates a golden year for cycling' on the Action Medical Research blog.

23 November 2012

50 years of hip surgery

Sir John Charnley created the hip replacement
Sir John Charnley created the hip replacement
Exactly 50 years ago, a British surgeon called John Charnley developed a technique that revolutionised hip replacement operations.

Later he was knighted for his efforts - and the work of the man now known as Sir John Charnley has since become the standard procedure.

It is an operation that has been carried out on patients across the world.

And it all started half a century ago in a small hospital in Lancashire.


Read the full BBC report and watch the video.

Action Medical Research helped Sir John establish a clinical research centre for hip surgery where his revolutionary work was carried out. The charity has continued to support many other projects over the years to further develop and refine the hip replacement procedure.

13 November 2012

Gift voucher – why not buy a loved one a bike ride this Christmas

Do you have a cyclist in your life? Why not buy them a bike ride this Christmas?


If you're stuck for gift ideas why not buy your loved one a bike ride this Christmas and help sick babies and children at the same time.

Just £50 will buy a place on one of our RIDE 100 bike rides which take place across the UK.


18 October 2012

H.R.H. The Duke of Edinburgh, hosts charity’s 60th anniversary reception at Buckingham Palace

A group of esteemed researchers will share their vital work with His Royal Highness the Duke of Edinburgh - Patron of children’s charity Action Medical Research, at a special reception at Buckingham Palace on the evening of Monday 15 October.

The Diamond Anniversary Reception will be held in a one of the State Rooms at the Palace and will celebrate the children’s charity’s 60th anniversary.

Representatives from the charity will include Mr Richard Price – Chairman, Field Marshal The Lord Guthrie GCB LVO OBE DL – President and Trustees.

Researchers from six projects currently being funded by the charity will present their work to The Duke of Edinburgh and more than 100 assembled guests.

Their work will include: studies into the cause of brain cancer in children; resuscitation of newborn babies; developing a vaccine for meningitis B; epilepsy in children; bowel problems in newborn babies; and multiple sclerosis among children.

Richard Price, Chairman of Action Medical Research, says: “We are honoured that Action Medical Research’s patron His Royal Highness the Duke of Edinburgh is hosting this reception to celebrate our 60th anniversary.

“It’s a wonderful way to mark this proud milestone and showcase to guests some of the fantastic research that we are currently funding across the UK to save and change the lives of babies and children.”

This year Action Medical Research celebrates 60 years of vital research. The charity is currently supporting work around Down syndrome, meningitis, epilepsy, cerebral palsy, premature birth and some very rare conditions that severely affect children.

For more information on the Diamond Anniversary Reception please visit www.action.org.uk/palace2012

17 October 2012

Help us save the lives of more vulnerable babies like Scarlett

"The first few weeks with a new baby are meant to be the happiest time of your lives, but we went through hell.
I had to avoid surprising Scarlett or touching her too much. I couldn’t even breastfeed my daughter, her nose and mouth were so sensitive, touching them would trigger convulsions."
Abbie, Scarlett's mother.

Scarlett from Grimsby (pictured here) is one of those gorgeous babies you just want to hug. But a hug in the first few weeks of life could have proved fatal to her because she was born with a rare brain disorder called hyperekplexia or startle disease.

If Scarlett is startled by noises or touch she reacts in an exaggerated way becoming rigid or unable to move. Sometimes she’ll stop breathing – so it could be fatal.

Very little is known about startle disease, so it took doctors two weeks to diagnose Scarlett. During that time, her life was in terrible danger. A delay in diagnosis can lead to a baby not receiving the best care – potentially putting their lives at risk.

Right now, Action Medical Research is supporting researchers in London and Swansea who are looking for more changes in genes that cause startle disease.

An early diagnosis for children with this rare disease can increase a child’s chances of survival. Will you help us find the answers?

11 October 2012

Christmas Card sales going well

 
Sales on Christmas cards on the action.org.uk website are going well with our holiday nuts being snatched quickly.

Buy your Christmas cards from Action Medical Research.

Ordering your Christmas cards from Action Medical Research helps fund vital research to help sick babies, children with disabilities and those suffering from a rare disease.

Grab your chance to Dine with Davina McCall


Action Medical Research is proud to present Dine with Davina – sponsored by NEXT on Friday 9 November 2012 at the Grand Harbour Hotel.

To help celebrate our 60th anniversary we would like to invite ladies to enjoy a special luncheon hosted by Davina McCall.

Davina says: ''I'm very excited to be hosting the sixth Dine with Davina and can't believe we have already raised over £165,000 to help support Action Medical Research - a charity very close to my heart. Ladies who are thinking about coming along, I promise you will love this event - there is lots of laughter, chat and always brilliant entertainment.
I do hope you will be able to join us!''

Haverhill Action Medical Research Halloween Dinner and Dance - 27 October 2012



You are invited to the Haverhill Action Medical Research Halloween Dinner and Dance at Wickhambrook Memorial Social Centre.

Date/time: Saturday 27 October 2012, 7:00pm for 7.30pm prompt
  • Dancing to local band - The Process
  • Black Tie or Fancy Dress
  • Carriages at midnight
  • Raffle and Bar
Tickets £50 from Mrs Joan Ford on 01440 730577 or Mrs G Argent - johnargent@hotmail.com

8 October 2012

Online registration for the Bucks 100 2013 goes live

Online registration for the Bucks 100 on the 15 September 2013 is now open.

Riders can register as either a fundraiser or a sportive rider.

Fundraisers

Register for £28 and commit to raising a minimum of £30 in sponsorship for Action Medical Research.

Sportive

Register for £50. You are not required to raise sponsorship as a donation is included.

If you can't make the Bucks 100 on the 15 September 2013, there are plenty of other 100-mile bike rides in our events calendar.

Top London researchers awarded grants to help sick babies and children

Leading researchers in London have been awarded more than £400,000 in grants by children’s charity Action Medical Research, to carry out studies which aim to help reduce the suffering of sick babies and children.

The charity is celebrating its anniversary in 2012 by marking 60 years of funding which has led to some key scientific breakthroughs. In total the new grants have been awarded to research institutes at universities and hospitals across the country, with more than £1.2 million investment across nine different projects.

London based researchers, in conjunction with others in Southampton, Sheffield and Cambridge, have been awarded £426,735 for work on Down syndrome, cystic fibrosis and sickle cell disease.

None of the charity’s work would be possible without the generosity of people who make donations, raise funds and take part in events, as well as our trust and corporate partners.

Dr Caroline Johnston, Research Evaluation Manager, said: “We know that medical research can save and change children’s lives. Our gold standard scientific review process ensures that we only fund the best doctors and researchers in children’s hospitals, specialist units and universities across the UK and we are delighted to announce these grant awards.”

The Apprentice’s Margaret Mountford supports Action Medical Research

Margaret Mountford of The Apprentice fame will take a break from her busy schedule to host Belfast Ladies’ Lunch for Action Medical Research at the Ramada Palace Belfast on Friday 19 April 2013.

The Northern Irish born former corporate lawyer says: "I am delighted to be associated with Action Medical Research – a charity which 60 years on, continues to find and fund vital medical research. I look forward to meeting the Belfast ladies at the event and together making a difference for sick babies and children."

Over 300 ladies are promised a peek into the good-humoured side of the lady whose headmistress-like demeanour and icy remarks have made many participants of the show break out in a sweat.

The ladies will be welcomed by TV presenter Pamela Ballantine, treated to a two course meal and have a chance to win the star ballot.

Belfast Ladies’ Lunch in April 2012 raised over £8,000 for the charity.


This year Action Medical Research celebrates 60 years of vital research. The charity is currently supporting work around Down syndrome, meningitis, epilepsy, cerebral palsy, premature birth and some very rare conditions that severely affect children.

4 October 2012

Diamond Diva Lunch - Friday 12 October 2012


It's our birthday – join us in celebrating 60 years of vital research for sick babies and children. What a great year to be celebrating our diamond anniversary and we hope you and your girlfriends will be able to join us for a very special Diamond day at the stunning Tithe Barn, Haselbury Mill set in the heart of Somerset and Dorset.

We can assure you of a warm welcome at our drinks reception followed by fabulous food and not to missed entertainment. There will be the opportunity to have a pamper on our beauty therapy stalls and ideas for a totally gorgeous new look with our fashion show by White Feather of Sherbourne.

Tickets are limited so we suggest you book early
Tickets: £28 per person

Book online at action.org.uk/diamond

3 October 2012

Investing £1.2 million in research for sick babies and children

Action Medical Research – the leading UK children's charity – has today announced grants worth more than £1.2 million for top researchers across the country.

The charity is celebrating its anniversary in 2012 by marking 60 years of funding which has led to some key scientific breakthroughs. The new grants have been awarded to research institutes at universities and hospitals investigating conditions affecting babies and children.

In this latest round of funding, the charity has given out a total of £1,218,929 across nine different projects including research for children with Down syndrome, cerebral palsy, asthma and cystic fibrosis:

Down syndrome and obstructive sleep apnoea: better screening might stop unnecessary suffering, two years, £199,752 granted to researchers at University Hospital Southampton, Evelina Children’s Hospital, London and Sheffield Children’s Hospital.
 
Developing treatments for the rare genetic disorder Smith-Lemil-Opitz syndrome, three years, £173,809 awarded to researchers at Cardiff University. Lead Researcher: Dr Emyr Lloyd-Evans, Cardiff University

Microneedle technology for pain-free drug monitoring in new born babies, two years, £94,154 awarded to researchers at Queen’s University Belfast. Lead Researcher: Dr Ryan Donnelly, Queen’s University Belfast

Does fungal infection contribute to the severity of asthma in children? two years, £133,642 awarded to researchers at University of Leicester, Leicester Royal Infirmary and Glenfield Hospital, Leicester. Lead Researcher: Dr Erol Gaillard, University of Leicester

Management of kidney complications in children with sickle cell disease, two years, £91,290 awarded to researchers at the University of Cambridge, University of Oxford and King’s College Hospital, London. Lead Researcher: Dr John Gibson, University of Cambridge

Thyroid function screening during pregnancy: benefits for child development? two years, £107,853 awarded to researchers at Cardiff University Lead Researcher: Professor Marian Ludgate, Cardiff University

Upper limb rehabilitation for children with hemiplegic cerebral palsy, two years, £109,372 granted to researchers at the Newcastle University and The Newcastle upon Tyne NHS Hospitals Foundation Trust. Lead Researcher: Professor Janet Eyre, Newcastle University

Reassessing lung function of pre-school children with cystic fibrosis, two years, £135,693 awarded to researchers at the Institute of Child Health, University College London and Royal Brompton Hospital, London. Lead Researcher: Dr Paul Aurora, University College London

Understanding the genetic basis of childhood ataxias, three years, £173,364 awarded to researchers at The John Radcliffe Hospital, Oxford. Lead Researcher: Dr Andrea Nemeth, John Radcliffe Hospital, Oxford

None of our work would be possible without the generosity of people who make donations, raise funds and take part in events, as well as our trust and corporate partners.

Dr Caroline Johnston, Research Evaluation Manager, says: “At Action Medical Research we are determined to stop the suffering of babies and children caused by disease and disability. We know that medical research can save and change children’s lives. The charity finds and funds some of the best medical research in the world for the benefit of babies, children and young people.”

“Our gold standard scientific review process ensures that we only fund the best doctors and researchers in children’s hospitals, specialist units and universities across the UK and we are delighted to announce our latest grant awards.”

Action Medical Research funds a total of approximately £3 million worth of research grants every year, awarded in the summer and autumn, the charity also awards Research Training Fellowships annually.

2 October 2012

Order your Christmas Cards on action.org.uk

Order your Christmas cards today and help fund vital research to help sick babies, children with disabilities and those suffering from a rare disease.