Charity's 60th anniversary: celebrating investment in top medical research to help epilepsy sufferers | Action Medical Research

Charity's 60th anniversary: celebrating investment in top medical research to help epilepsy sufferers

17 May 2012

Children’s charity Action Medical Research is celebrating its 60th anniversary this year; marking National Epilepsy Week (20-26 May 2012) by highlighting its funding history of epilepsy research. Over £3 million has been invested in this field by the charity which has helped thousands of sufferers across the UK.

Identifying genes which may cause the condition and improved surgery have all come about as a result of projects funded by the charity over its 60 year history.

Around half a million people in the UK are estimated to have epilepsy1, an estimated 60,000 of whom are children and teenagers under 18.2 Existing drugs have side effects which can be unpleasant and, sadly, around one in three are living with epilepsy that is difficult to control with this medication.3,4 One such case is teenager Kian Clayden, now 16. [see case study in Editor’s Notes below]

Action Medical Research has a long history of supporting epilepsy research and continues to support projects today.

Surgery: offering hope of seizure-free life
If the drugs don’t work, the next option has been to consider surgery, potentially offering a life totally free from seizures.5,6 More people with epilepsy can now have this life-changing surgery thanks to a revolutionary method of brain scanning.

The new ways of taking brain scans were developed by a team of experts awarded a grant from Action Medical Research in 1998.* Unfortunately, before this project began one in four patients considered for surgery could not go ahead because it was not possible to pinpoint exactly where seizures started in their brain.7-11

The innovative scans can be used on most modern MRI scanners in NHS Hospitals around the country and this, “increased the pick-up rate of abnormalities and facilitated earlier surgical treatment of those in whom medication is not effective,” explains Professor Duncan, lead researcher on the charity funded project.

Two different research teams at University College London are also currently investigating whether a further advance in brain scanning can enable doctors to offer the life-changing surgery to even more adults and children with uncontrolled epilepsy.** [see case study details in Editor’s Notes below]

The gene hunt
Juvenile myoclonic epilepsy (JME) is a common form of epilepsy that can be passed down from parent to child, affecting around 5-11% of all people with epilepsy12. Seizures typically start in children between the ages of 12 and 18.12 Most children with JME will need to take medication for life and some of them will continue to have seizures anyway.

An Action Medical Research funded investigation has looked at the genetic causes of JME.*** Cutting edge genetic technology was used to identify faulty genes in three large families in which many members are affected by JME. The team are continuing their investigations.

Throwing light on the specific genetic cause of JME can help new and more effective treatments. Current treatment involves trying different drugs, or combinations of drugs, until something works or partially works – more targeted drugs could be introduced to treat the distressing symptoms of the condition sooner.

Elsewhere, with funding from Action Medical Research, the DNA of 500 children with epilepsy is being examined to find genetic changes that might cause their seizures.**** They are focusing on children who carry on having seizures despite trying all available medication, as they have the most to gain from any new drugs.

Still more to do
Although the research we have funded has helped save and change so many children’s lives, there is still so much more to learn about what triggers diseases, how to prevent them and how to develop effective new treatments and find the best ways to care for sick babies and children.

Today, Action Medical Research plays a vital role as the leading UK-wide medical research charity dedicated to helping babies and children.

The charity funds a total of approximately £3 million worth of research grants every year. As well as supporting project grants, awarded in the summer and autumn, the charity also awards Research Training Fellowships annually.

- ENDS -


* This project was generously supported by the Garfield Weston Foundation.
** This project was supported by The Alison Hillman Charitable Trust.
*** This project was supported by The Alison Hillman Charitable Trust and Next Plc.
**** This project was generously funded by The Henry Smith Charity.

Case study: Kian Clayden (Essex – longer version and photos available)
As a tiny newborn baby Kian Clayden suffered seizures and was admitted to the neonatal unit. His earliest years were then seizure free, but sadly a diagnosis of epilepsy followed a severe seizure when Kian was just eight.

“To be honest I was completely heartbroken, it turned our world upside down,” his mum Sarah admits.

Seizures can be scary and unpredictable. Even riding a bike can be dangerous if a child suffers a seizure. “I wanted to wrap him in bubble wrap and keep him next to me at all times so that I knew he would be safe and unable to hurt himself,” says his mum.

Kian is now 16. He is a kind, caring, thoughtful young man who enjoys the usual teenage things. He suffers from seizures at least each fortnight and sometimes every week. Although medication has meant the seizures are milder, these still disrupt Kian’s daily life. His mum explains: “All he wants is to be independent and to not have seizures anymore. He can become very down and withdrawn.”

Further case studies on children with epilepsy who have undergone brain surgery are available on request. Contact Toni Slater in the first instance, details below.

1. Morrison N, Thomas R, Smith P. A patient’s journey: JME. BMJ 2012;344:e360.
2. Joint Epilepsy Council of the UK and Ireland. Epilepsy prevalence, incidence and other statistics. March 2005.
3. Kwan P, Brodie MJ. Early identification of refractory epilepsy. N Engl J Med 2000; 342(5):314-9.
4. Epilepsy Society. Accessed October 2011:
5. Berg AT, Mathern GW, Bronen RA, Fulbright RK, DiMario F, Testa FM, Levy SR. Frequency, prognosis and surgical treatment of structural abnormalities seen with magnetic resonance imaging in childhood epilepsy. Brain. 2009;132:2785-97.
6. NICE epilepsy guidelines 2004
7. Duncan JS et al. Adult Epilepsy. Lancet 2006;367(9516):1087-100.
8. Rugg-Gunn FJ, Eriksson SH, Symms MR, Barker GJ, Duncan JS. Diffusion tensor imaging of cryptogenic and acquired partial epilepsies. Brain 2001; 124: 627-636.
9. Rugg-Gunn FJ, Eriksson SH, Symms MR, Barker GJ, Thom M, Harkness W, Duncan JS. Diffusion tensor imaging in refractory epilepsy - localization of focus and histopathological confirmation following resective surgery. Lancet 2002; 359: 1748-51.
10. Rugg-Gunn FJ, Eriksson SH, Boulby PA, Symms MR, Barker GJ, Duncan JS. Magnetization transfer imaging in focal epilepsy. Neurology 2003; 60(10):1638-1645.
11. Rugg-Gunn FJ, Boulby PA, Symms MR, Barker GJ, Duncan JS. Whole brain T2- mapping demonstrates occult abnormalities in focal epilepsy. Neurology 2005; 64(2):318-325.
12. Nordli DR. Idiopathic generalized epilepsies recognized by the International League Against Epilepsy. Epilepsia 2005; 46: 48–56. doi: 10.1111/j.1528-1167.2005.00313.x.

For further information please contact:
Toni Slater, Interim Communications Manager
T: 01403 327478

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Action Medical Research - the leading UK-wide medical research charity dedicated to helping babies and children - is celebrating 60 years of vital research in 2012. We’ve been funding medical breakthroughs since we began in 1952 and have spent more than £100 million on research that has helped save thousands of children’s lives and changed many more. Today, we continue to find and fund the very best medical research to help stop the suffering of babies and children caused by disease and disability. We want to make a difference in:

• tackling premature birth and treating sick and vulnerable babies
• helping children affected by disability, disabling conditions and infections
• targeting rare diseases that together severely affect many forgotten children.

But there is still so much more to do. Make 2012 a special year and help fund more life-changing research for some of the UK’s sickest babies and children.

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