The 2012 weather was perfect!

The 2013 RST Invitational

After the success of our previous two sold out golf events at the beautiful Brocket Hall, Friday 9th August 2013 will again see us returning for a third year of The RST Invitational.  For all the details of the day, and to sign up, please click here. We would love to see you there.    

Read on to see how the previous years panned out and to see what you could be missing out on!         

2012…                                                       

 ‘The  2012  RST Invitational‘  was another great event for us. Once more we had a capacity field of 72 golfers battling it out on the beautiful ‘Melbourne’ course at Brocket Hall.  A big thanks again to Porsche Centre Hatfield for sponsoring the event and for providing us with a brand new Porsche as a hole in one prize!                                                                           

We would also like to thank the following organisations for making the event possible;                                                                           

• Serious Law LLP
• SCCI Group
• Harris-Lipman
• Vision Plc
• London Golf Club
• The Buckinghamshire Golf Club

   A special mention too for Alan from Fun Raising and to Keith our photographer from KR                                                                           

Below is our top ten leader board, our prize winners and a few pictures. Next years event will take place at Brocket again on Friday 9^th August 2013. Drop us a line if you’re interested… but book early!!                                                                           

2012 Top Ten Leaderboard   

Prize winners 2012                                                                     

Our winners SCCI won entry to the SL Classic at The Belfry.

3rd place won a round on The Buckinghamshire

Our 2nd placed team won a round at The London Club

        For more pictures from the 2012 day please click here     

 2011…           

A big thanks to the 72 golfers who turned up to support the ‘RST Invitational’ at Brocket Hall, Herts on 1st April 2011. Thanks to Porsche Centre Hatfield for their support.It was a great atmosphere and we hope that everyone enjoyed the day. Below you will find some pictures of our prize winners, along with our top ten final leader-board. Check out ourFacebook page  for more pictures.                                                                               

Also thanks to the follow companies for sponsoring the day.                                                                               

• Porsche Centre Hatfield
• MAN Building Services Ltd
• Serious Law
• SCCI Group Ltd
• Harris-Lipman Chartered Accountants
• JP Consulting
• Be-Digital Media Ltd
• KR Video & Photography
• The Guys at East Herts Pro-Shop

The Top Ten Leaderboard                                   

Position	Team Name	Points
1st	Abbeyview Services and Be-Digital Media	94
2nd	SNR Plastering & Guests	91
3rd	Serious Law and Spinal Research	90
4th	JP Consulting & Fujitsu	87
5th	Vision Plc	86
	SCCI Group Ltd	86
7th	Steve James Financial Services	81
	R Turvill Glass and Glazing	81
9th	CITI Group	78
10th	DarrenOdam.com	77

A special mention goes to David Barney & Co Solicitors for their very generous donation, thanks guys.                                                                               

The Prize winners                                                 

Our 2011 Champions – Abbeyview Services and Be-digital Media.
2nd – SNR Plastering & Guests	3rd – Serious Law & Spinal Research

Richard Dixon was our nearest the pin winner

A 300 yard drive saw Stuart Clarke win the longest drive contest

RST supporter Ken Randlesome, one of our best dressed contenders

Watch this space for our events list for 2014…

‘Every year hundreds of people in the UK suffer a debilitating injury or medical condition that impacts dramatically on their’s and their immediate family’s life. Prime Physio uses exercise and technology to help improve that quality of life after their life changing event. Our guarantee to you is that we will have a positive and lasting impact on your life’. Have a look at their website www.primephysio.co.uk They have a great team, we’d highly recommend it to anyone with an SCI who has the heart and desire to progress.

Sam has been an supporter of RST since the early days.  In 2006 Sam helped to secure us as an official charity for Barclays Plc and was a member of our first tandem skydive team.    

For the last two and a half years Sam has been living in the United Arab Emirates with his wife and two children but keeps a close eye on the progress of Marrianne and RST.    

Sam says “my passion, in no particualr order.. is Aston Villa (come on, it could be worse, it could be spurs!) and my wife and two children who I love dearly, even if they do drive me up the wall sometimes”.      

Sam on the left back at our 2006 jump day.

Fundraising plans?  “I am running the Standard Chartered  10k race. (http://www.dubaimarathon.org/)  It will be challenging, mainly due to the heat but also Christmas has left me feeling very fat and unfit.    

Why did you become a champion?  I decided to be an RST champion because I think it is a great charity with a fantastic cause and I have so much respect for what they are doing. I anticipate to continue with the fundraising throughout 2012 to exceed my target but not sure what my next challenge will be yet.    

RST says.. “Sam has done more than his fair share for RST in the past and we are proud to consider him a friend. We know he has a busy life over in the UAE which is why we are delighted that Sam is still thinking of us and spreading the word about our work over there in the sunshine”.

May 2013 saw the inaugural ‘Border Cup’ get underway on the Championship course at the lovely Forest of Arden near Birmingham.

A team match play golf event inspired by The Ryder Cup but instead of Europe and USA battling it out, The Border Cup is where our friends from the North take on our friends from the South… and all to help people affected by Spinal Cord Injury.

The event was put together by our very own co-founder Andy, who came up with the concept whilst enjoying a friendly round with some friends from Bolton. Andy also invited Spinal Research to be joint beneficiary of this new and exciting annual event.

20 teams came together, 10 v 10, each team trying to score a vital point for their team. With team South in their black team shirts and team North in white, thanks to Sub70 golf, the event had a brilliant atmosphere. This year Team South sneaked it by one point…. But team north will be back stronger than ever next year! (though I’m sure there will be plenty of banter flying around in the mean time!)

Whist the team score was all that really mattered, there were some great individual prizes too. Thanks to our pro supporters Brian Sweeney and Jack Brooks, who took time off the tour to come along and support us and give us some great Pro-Am prizes to give away.

A big thanks to everyone who came along to play this year. If you fancy being involved in the 2014 Border Cup… we love to see you. Drop us a line info@rstrust.com

The 2013 Virgin London Marathon (VLM) was a great day for RST. We were so excited to have our first ‘team’ of runners representing us. Our 8 strong team were raising money for us and our friends Spinal Research and between them have raised approximately £19,000 so far.  Amazing!

All the team put a lot of work in with training and raising money for us and we really are very grateful. It was also really nice to see so many friends and family coming along to cheer everyone on. All of whom looked very snazzy in their TeamRST marathon tops.

A mention of thanks goes to running legend Mo Farah too. No, sadly he wasn’t in our running team but he did stop to do his live TV interview to millions… right in front of our banner! Nice job Mo.

We’ll be back in 2014…. If you fancy running for our small but perfectly formed team, please send us an email.

Below you’ll find some pictures from last year…. To get you in the mood!!

Steve, Marrianne and Roger

Sunday 7th April 2013 saw us hold our 3rd annual 10k and 2k family run. It was another great event for RST and we’d like to thank all the runners and their supporters who came along to The Redbridge Cycle Centre, Forest Road, Hainault, Ilford, where we staged the run.

The race always has a very welcoming and friendly vibe and if you don’t fancy doing the full 10k there is always the family 2k where everyone is welcome.  Our race will be back in the spring of 2014. We’d love to see you there. Full details  on how to register and the dates for 2014 will appear here, so please watch this space.

You can also see all the pictures from our past 10k events on our Facebook page.

A massive thanks to Keith Rogers, all the models, make up artists and everyone who supported the launch of ‘STRUT’. The fashion show, and magazine,  that will be raising money for RST.

The gorgeous Hanbury Manor in Herts was the location for this glamorous evening and we were also delighted to have the lovely girls from Britain and Irelands next top model supporting us.

Watch this space for the next STRUT fashion show.

See all the pictures and videos on the STRUT facebook page.

RST fun for all ages

On 1^st January 2012 the first ever RST ‘Championship’ went live. Our mission is for the championship to raise £10,000 in 12 months, as well as help spread the word of our work.                                        

What’s it all about?                                        

In late 2011 we asked for 20 individuals / teams to volunteer to become ‘champions’ of the Rooprai Spinal Trust. Their task? To raise at least £500 per champion before 1^st Jan 2013 and thus helping the championship to raise £10,000.                                        

The RST team are 100% behind each of our champions, giving all the support they need.  We are only a small affair, so being a champion makes you part of the family!                                                 

We hope our ideas will mean you can keep you hair!

  It  is a ‘marathon and not a sprint’ and with 12 months for our champions to hit their target, we hope it will be a fun process.                                        

Every month we will update our site with everyone’s progress and share fundraising ideas. Of course RST wouldn’t be RST without exchanging the odd bit of ‘banter’ with the champions.                                          

We’ll also have a tip of the month!                                       

….               

January Tip… Our opening tip for our champions is to get yourself on Facebook and Twitter. Tell people what your plans are, ask for ideas…just get out there and talk to people, plant a few RST seeds for the months to come. It’s all free… so get cracking!!                                        

Meet the 2012 teams                    

• Sam Vicary
• Thelma & Louise
• Hart 2 Hart
• Team Wackett
• Ronnie & Bern
• Sarah & Rich
• Clarkey
• Heidi Light
• ZZ & Woz
• Anna
• E

Others are on the way..   

other info on its way..

Kev in a rowing competition, just one day before his injury.

 I was 23 years old when I had my accident playing rugby for my local club in Romford, Essex.  At the time of my injury I had recently started a career as a management consultant in London after graduating from university the previous year. It’s true when people say you never know what’s round the corner and on a mild Saturday afternoon in February 2000 my life changed suddenly.             

Whilst playing a game I’d played many times before, a fairly innocuous challenge… broke my neck.               

I was unable to move my legs and the power seemed to be draining away from my arms. I was fortunate that I received appropriate first aid on the pitch and an ambulance was called to take me to the local hospital. Although I was very frightened I felt that once I got to hospital someone would be able to fix me. It was hard to believe that something that had happened so suddenly couldn’t be reversed easily. I was examined by all sorts of different medical professionals, given a MRI scan and  told that I had sustained a spinal cord injury at the level of C4/5. Of course this meant nothing to me at the time. I was transferred to a ward and put in skull traction in an attempt to pull the spine back in place. The traction was unsuccessful so surgery was used to repair and stabilise my neck. When I came round from the surgery, I was on an intensive care ward on a life-support machine. At that time I was unable to breathe, speak or move any part of my body.  I was constantly sedated, confused and frightened. My family kept a constant vigil by my bed and over the weeks I became strong enough to breathe on my own and get out of bed. I remember feeling very shocked the first time I had to sit in a wheelchair, although at that time I believed it would only be for a short time. Also, having to rely on someone else to help me with all my bodily functions, although necessary, was incredibly embarrassing for me.              

My time in intensive care will be familiar to many who have experience a similar injury to me.  I had several complications associated with a long stay in intensive care, contracting infections that made me gravely ill and constantly fighting to stay alive. I had no idea what the future held, my life seemed in turmoil and I thought the ordeal would never end. Eventually it did end and three months after leaving my house to play rugby, I was strong enough to leave intensive care and go home. I was at home for only a short period until I was transferred to Stoke Mandeville spinal unit.               

I expected many answers at the spinal unit but, in truth, all I was left with was more and more questions. It had been some time since my injury and I still held out hope that a miracle worker was waiting for me at Stoke Mandeville. Sadly, there are no miracles. I can still remember being told once and for all ‘you’ll never walk again’. Although I expected it, hearing those words was a devastating blow that I’ll never forget. Straight after hearing the news, I was asked what I wanted for lunch. Life was going on as normal and I couldn’t understand how. By the way, on the menu for lunch thatafternoon was Sheppard’s pie or ham salad.  I wasn’t hungry!           

I soon began my rehab.  Seeing myself in a wheelchair in the mirror for the first time was a shock that caused me to burst into tears. My body was emaciated and I remember feeling that it belonged to a stranger. Whilst there I felt I had become more and more distant from my past and the world I knew. I was also feeling less and less human.  I couldn’t see how anyone would want to have a relationship with me while I’m in a wheelchair. The medical staff did their best but they categorised you in terms of your level of injury – in my case C4/5.  They were less interested in who they could see but rather what they ought to see in terms of my diagnosis: objectifying me, forgetting the person with the injury. Fortunately for me I had strong and loyal family and friends helping me to get through this tough period.  Having good support was my life line during that period and I had visitors nearly every day.              

I had a lot to learn about my injury at this point. For example, how to manage my bladder and bowels, which wheelchair to use, how to manage my spasms and avoid pressure sores. I had always gone home for weekend visits, so going into the community, although daunting at first, was something I was able to negotiate quite soon after the injury.  I hated going out in public. I felt that everyone was looking at me, I felt incredibly self-conscious and was frightened that I might have a bladder or bowel accident.  Ultimately,  I was just  embarrassed to be seen in a wheelchair and couldn’t wait to get to back to the safety of my house or the ward.              

My transition from hospital to home was relatively smooth. I lived with my parents after leaving hospital and had a carer to assist me with my daily needs. Finding the right carer can be incredibly difficult, you need to find the balance between someone who is able to do the job but also someone you can get on with. At first I tried to adjust to my new situation and carried on socialising with friends, going on holiday and making plans for the future. I still had a job, and had made plans to return to work for my company which had kept my job to me. But in truth, I had little motivation to return to work and when I was offered redundancy I took it. I concentrated on trying to gain as much function and strength as possible by throwing myself into an exercise regime and although I grew stronger I regained little function.  I was feeling more and more depressed. My mental health was an area that I had neglected since the injury –  for whatever reason I hadn’t asked for help. I knew that I wanted to change but didn’t know where to begin until, eventually, I had a mental breakdown. It had taken me many years, but I had reached rock bottom and when you reach the bottom there only one place left to go.   Let’s face it, even a dead cat bounces!   The hard thing is  gathering the momentum to keep rising.         

Back out with friends

It was in many ways a blessing that I had reached this low point because now I was willing to get the psychological support I required. I was counselled and taught to recognise that what I was feeling was a natural and understandable reaction to a traumatic life changing event. I realised that physically I’m not going to change, but I still had control over my thoughts and by thinking differently about my situation I could still have a good life.  The bottom line is that I very nearly died after my injury and I’ve been lucky to get second chance at life.  Instead of thinking of the horrible situation I was in, I realised that you have only one go in life and it’s up to me to make the most of it. I decided to change my life and find new meaning in my existence.  I started to go out more and forced myself to do things even if I didn’t want to. It took time and I had some set backs but bit-by-bit I became more confident which, in turn, led to me setting myself bigger and harder goals. For example, I went skiing which was something I wouldn’t have contemplated in the past, because I really hate the cold. I realised after this challenge that I was capable of doing much more. This also brought me into contact with other wheelchair users that were living their lives to the full, I got a lot of inspiration from these individuals. Also, at this time, I was also renovating a house that I had bought, where I could live independently.                          

•    Kevin Hartie

•    Lianne Crowe

Four young men who met at Loughborough University are gearing up to row 3000 miles across the Atlantic Ocean in aid of Spinal Research UK.

By taking part in the trans-Atlantic crossing, the crew will set the world records for the youngest four-man crew and Hugo and Ross will be the first twins to row across any ocean in the world.

For one of the rowers, Hugo, the challenge is even more pertinent as, aged 17, a freak accident caused severe damage to his spinal cord meaning he had to undergo surgery for neck reconstruction and learn to walk again.  ”My life was put on hold for two years – they said I would never be able to play sport again”. “By rowing the Atlantic I want raise vital funds to research a cure for paralysis”, said Hugo. Adding: “I am fortunate enough to be able to attempt to row the Atlantic and realise how close I was to being paralysed – this will be a very personal challenge for me at every level”. “Since my injury, Spinal Research has been a charity that I have become very passionate in supporting as they fund pioneering research for the effective treatment of spinal injury”.

Good luck guys, we are all cheering for you!!

Hugo, Ross and friends Greg Symondson and Adam Wolley make up the Atlantic4 crew and are embarking on a potentially life threatening trip. Before they depart in December they will undergo extensive sea survival skills, remote first aid and navigation training. The crossing is unassisted which means they will have to be self-sufficient and carry with them all their equipment and food for their journey.

 You can support the crew via their website at www.theatlantic4.com and on twitter by following @theatlantic4

 The crew are also in great need of corporate sponsorship to help with the high costs of making the crossing possible, please see the website if you think your company may be able to help.

Our friend Josh, injured at C4 level, has seen great improvements from using the FES-rowing.

For some time now we at RST have been aware of the benefits of Functional Electrical Stimulation (FES) for people with SCI. Many people, throughout the world, have championed its benefits.            

Robin Gibbons is the driving force behind the FES-Rowing studies at Brunel University, which is striving to prove the positive benefits of FES-rowing on people with SCI. They are currently looking for volunteers with SCI to help them, which ultimately could benefit everyone with a spinal cord injury.           

Robin told RST…           

“I was first involved using Functional Electrical Stimulation (FES) to assist my cardiorespiratory exercise intensity in 2003; 2 years after a RTA rendered me paralysed from the chest down. Professor Brian Andrews was one of two researchers who were investigating the possibility of improving health and fitness using a hybrid FES-assisted exercise system for people with spinal cord injury (SCI). This was in the early 1990′s at the University of Alberta, Canada.           

 I joined the newly formed UK FES-Rowing Group in May 2003. A number of significant developments have been made since then. I have also moved on from helping with the design and pilot testing of the equipment to developing training regimes and more recently the exercise potential the equipment has to offer. I started a PhD in September 2008 at Brunel University with a number of studies designed to investigate changes to cardiorespiratory health and fitness following a carefully controlled programme of FES-Rowing training. I have conducted a number of very promising pilot studies since then and more recently forged collaboration with the University of Wales Institute, Cardiff (UWIC). UWIC will be investigating the vascular health under the leadership of PhD student Keeron Stone.           

We are now actively recruiting subjects to further establish the efficacy this hybrid FES-exercise modality has to offer. There are two participant groups, one will be FES-trained, the other will remain untrained. The training programme takes approximately 16 weeks to complete depending on how regularly a person trains”.           

FES-rowing has many benefits for people with SCI.

If you, or someone you know, would be interested in participating either as a trained or untrained subject, please contact:           

 Robin Gibbons on 07906770423           

or email Robin.Gibbons@brunel.ac.uk           

You can also read the  ‘Participants information pack’  here.         

Good luck Robin, a brilliant study and we hope many will seize this great opportunity. RST

A team from Case Western Reserve University School of Medicine were able to bridge a spinal cord injury and biologically regenerated lost nerve connections to the diaphragm, restoring breathing in the rodents with spinal injury.

According to the authors, restoration of breathing is the top desire of people with spinal cord injuries.

Furthermore, respiratory infections which occur through the ventilation systems, are a major cause of death in this group.

Jerry Silver, professor of neurosciences at the university, said: “All the nerves hook up with interneurons and somehow unwanted activities are filtered out but signals for breathing come through.

“The spinal cord is smart.”

In other spinal injury news, a study published in the Journal of Spinal Cord Medicine revealed that the severity of spinal cord injury does not necessarily impact on how adults with the condition rate their health.

Mayo Clinic medical geneticist Andre Terzic claims that one of the major problems with stem cell development has been the “unrealistic hype”.

He added that there has been a trend for promising therapies “far faster than the science could produce”.

“We need to accelerate the pace of this research, and speed discoveries in regenerative medicine to help patients,” Mr Terzic added.

There are still lots of challenges and controversies surrounding the use of induced pluripotent (iPS) cells, which have come to replace the original stem cells drawn from human embryos.

The iPS cells require no destruction of human embryos, but are considered to have some limits of use compared to stem cells.

Last month, the University of Kansas claimed it had received an anonymous $4 million (£2.5 million) donation for stem cell research to further spinal cord injury treatments.

Justin M Brown, MD

Center for Neurophysiology and Restorative Neurology Division, Neurosurgery University of California, San Diego School of Medicine

Mr Brown has been speaking to RST regarding a recent paper he has submitted to Surgical Neurology International. The paper details Nerve Transfers in Tetraplegia and makes for a fascinating read. With already encouraging signs regarding the outcome of the procedure, a second paper will be published next year with the full outcome details. Recovering hand function is highlighted as the priority for tetraplegia.  Whilst most tetras are unwilling to undergo tendon transfers for ‘fear of disfigurement when a cure is close to the horizon” perhaps nerve transfers is an alternative? Nerve transfers could also be an option for those who aren’t suitable for tendon transfers, such as the C5 tetraplegic highlighted in the paper.

Mr Brown has kindly allowed us access to his report, which can be viewed via the link below.

Many thanks and keep up the good work.

The Paper  (Warning, the paper does contain some graphic pictures of the procedure)

Spinal injury patients have a significantly improved chance of survival if they undergo surgery, a new study has shown.

Those who received surgery for their spinal injury were seen to have a 44 per cent decreased chance of death compared to patients who were treated with just bed rest and painkillers, reports the Daily Telegraph.

The study, which was presented at the meeting of the British Geriatric Society, revealed a 74.8 per cent survival rate in spinal injury patients who were operated on 24 months later, in comparison to the 67.4 per cent of those who were not.

Moreover, there was a much reduced chance of death in the surgery group after four years.

Michael Kotrba, of Croydon University Hospital, told the newspaper: : “We’ve known for a long time about the benefits of minimally invasive surgical intervention in the reduction of pain but this is the first time we seem to have robust data showing that it can highly contribute to saving lives.”

Meanwhile, researchers at Rutgers University have discovered a new treatment for spinal injury, which minimises nerve damage and pain.

The scientists used a siRNA molecule to decrease the production of RhoA – a protein which prevents the regeneration of nerve cells in the spinal cord, thereby stopping the spinal injury from healing.

A stem cell trial which could bring hope to many people with spinal cord injury has received substantial funding of $25 million (£15.3 million).

The California Institute for Regenerative Medicine (CIRM) has awarded the funding to Geron Corp, which is carrying out the first Food and Drug Administration-approved human embryonic stem cell trial.

Robert Klein, CIRM chairman, said: “We need to be prepared to stand by the heroic patients and the companies as they face these challenges and solve the problems that stand in the way of the recovery of patients from paralysis.”

This follows the launch of the first neural stem cell trial for spinal cord injury by StemCells Inc.

Scientists are to use human neural stem cells which have the ability to transform into any of the central nervous system cell types.

The trial is designed to assess the safety of the procedure as well as observe the potential benefits to the patient, such as improved sensation, motor function and bowel or bladder function.

Scientists have uncovered a new treatment for spinal cord injury which minimises nerve damage and pain in the condition.

A study at Rutgers University found that there is increased production of a protein known as RhoA which prevents the regeneration of nerve cells in the spinal cord, stopping the spinal injury from healing.

Scientists used a chemically-synthesised siRNA molecule to decrease RhoA production, thereby counteracting some of its effects.

Martin Grumet of the institute said: “It is exciting because this minimally-invasive treatment can selectively target the injured tissue and thereby promote healing and reduce pain.”

These findings are sure to be particularly important to Rutgers University, following the high profile spinal injury of its football player Eric LeGrand last year.

LeGrand suffered a severe spinal injury after a tackle went wrong during a game, leaving him paralysed from the neck down.

A new treatment which uses tiny bursts of electricity could drastically improve the lives of patients with spinal injury, research has shown.

The study, published online in Neurorehabilitation and Neural Repair, found that they could improve the grasping ability in those with incomplete spinal injury through the use of functional electrical stimulation (FES).

FES therapy, which uses low electrical pulses to reawaken paralysed muscles, was found to significantly reduce disability in those with the spinal injury.

Lead author Dr Milos R Popovic of Toronto Rehab said: “This study proves that by stimulating peripheral nerves and muscles, you can actually retrain the brain.

“A few years ago, we did not believe this was possible.”

This comes after researchers from Radboud University Nijmegen Medical Center in the Netherlands developed a simple model able to predict which spinal injury  patients will walk again unaided and which will require assistance.

Wearable exoskeleton “RiceWrist”, developed at Rice University in Texas, allows the user to do supported and unsupported repetitive movements, thereby rebuilding motor pathways in the brain.

During the recovery process, the robot supports as needed by the user, meaning that the patient can do all the work themselves but is assisted or fully sustained by the RiceWrist when they require the help.

Professor Marcia O’Malley from the university said that the robot is “not just an exercise machine”.

“If you really want to reconnect those motor pathways, they need to have the intent. They need the brain thinking about moving and the limbs moving at the same time. That firing in the brain and the spinal cord leads to remapping,” she explained.

Dr Patrick Stroman, of Queen’s University, explained that while the spinal cord  is usually thought of as a relay system, it is part of the central nervous system and processes information just like certain regions of the brain.

It was also revealed that levels of attention affect the information processing in the spinal cord. The research team used an MRI scanner to detect levels of activity on the spinal cord in people who were either concentrating or distracted.

“We already knew that a person’s level of attention affects information processing in the brain, but this finding has made us aware that level of attention has to be properly controlled in research that aims to accurately map spinal cord function,” he said.

Meanwhile, an E-learning tool is being designed to help medical professionals treating spinal cord injury.  Developed by the Indian Spinal Injuries Centre and partners, the tool will encompass different modules focusing on basic and comprehensive management of the condition.

For information on how to receive an invite or sponsor a hole, please drop us an email – info@rstrust.com

Scientists from Johns Hopkins found that the experimental compounds used to help Alzheimer’s patients also make crushed or cut nerve endings regenerate faster.

Researcher Mohamed Farah explained that after a spinal cord injury, the environment surrounding the nerves can degenerate, meaning that the nerve cannot heal.

“If we can help nerves re-grow faster, we increase the chances that they can reach their target and become healthy again after injury,” he continued.

Researchers are now planning to test the compounds on animal models of spinal injury and other examples of nerve damage.

In other news, the Gerontological Society of America has said that better management of chronic pain, such as that seen in spinal injury, could reduce disability in older patients.

According to the organisation, inadequate treatment of the condition in older people leads to unnecessary suffering.

Virgin Media Tandem Skydive Day, in aid of  The Rooprai Spinal Trust, at The Skydive Centre, March, Cambs.

The day was originally planned for Saturday 23^rd July 2011 but unfortunately, due to the weather, the day has been rescheduled.

We will let you know when everyone has jumped and put some pictures up but for now we will wish everyone good luck – it will be worth the wait!!  

If you can raise £300 or more in sponsorship via The RST Virgin Money Giving page, you can still jump for free! There could still be time!!

Please email samantha.ironside@virginmedia.co.uk to register. Sam will then email you all the information you need, then you can start gathering sponsors!

As the trust continues to expand we hope to add to our list and make more grants available.            

Item One            

Life is very hard for those with little or no movement in their hands and fingers. Gripping everyday objects, which many of us take for granted, can be impossible.            

ActiveHands.co.uk have invented a great product to aid with gripping. Marrianne has used the active hands gloves for years now and they have helped her do a variety of things. From working out with weights through to playing the Wii.            

A pair of gloves usually retail for £90 but thanks to our friends at ActiveHands.co.uk and the RST supporters we are able to offer successful applicants a pair of gloves for FREE!            

For more information on the products www.activehands.co.uk offer please visit their site. To apply for your free gloves, please fill in the application form which will appear on the bottom of this page.  (terms and conditions will apply)            

Mark with his trainair, which RST helped to buy.

Item Two            

Most spinal cord injuries cause damage to the diaphragm. This can result in a shortage of breath and affect peoples ability to cough (which can be very dangerous). For a few years now Marrianne has been working with a piece of equipment called the trainair. As Marrianne’s diaphragm only worked at 50% after her injury, the trainair has helped her a great deal and is a good way for Marrianne to ‘give her lungs a workout’. For more information on the trainair and to see all the medial reports on the product please visit www.trainair.co.uk            

The trainair usually retails for £499. Thanks to the RST supporters and our friends at trainair, RST can offer successful applicants £200 towards a trainair.  To apply for a grant please fill in the application form which will appear on the bottom of this page.            

    (We are just waiting for our legal team to draft the application form. The form will appear here in the next few days. If you would like to register your interest before then, please drop us an email.)            

Kev with his trainair, which RST helped to buy, whilst on his FES bike..good work Kev.

May 2011 –  “Many thanks for your generous support in helping to provide us with a Trainair system. It’s a very kind gesture and one which brightened our day at a time when everything still seems so difficult. Kev has tried the system a couple of times and plans to use it 3 times per week. We will keep you posted with his progress. Thanks again for the chat and your help and advice so far – It’s much appreciated. Maybe one day we will meet up.Thanks again and all the best.            

Love from Becky and Kev”  (kev had a c7 injury in 2010)         

 Item Three          

We are in the process of offering help for Physio…watch this space for more info. 

‘

Spinal Research is the UK’s leading charity funding medical research around the world to develop reliable treatments for paralysis caused by a broken back or neck.

Every year more than 800 people in the UK and Ireland are paralysed following an injury to their spinal cord. Spinal Research raises money to fund research into clinical treatments as well as vital basic science research. Thanks to such pioneering research, paralysis can now be treated and we stand on the brink of applying therapies that will restore movement and feeling and transform the lives of paralysed people.Spinal Research’s latest research focus – Chronic Injury. Find out more. Gemma Quinn, Spinal Research Supporter – paralysed in a car accident aged seven.

Celtic Manor 2011           

RST were delighted to be invited along to Spinal Research’s 2011 golf day at Celtic Manor. It was a brilliant day and great to see so many people supporting the fight to find a cure for paralysis.           

Of course the day was great fun but most importantly it was a brilliant way to raise funds and for people to find out a little more about the exciting work they are undertaking at Spinal Research UK.            

Unfortunately the RST team didn’t win, we didn’t even make the top 3! But we’ll be back next year to try again!!           

The RST Dream Team

A great day at Celtic Manor

  RST’s interview with the Chief Executive of Spinal Research coming soon…   

]]> http://www.rstrust.com/?feed=rss2&p=82 0 http://www.rstrust.com/?p=932 http://www.rstrust.com/?p=932#comments Wed, 16 Feb 2011 11:26:09 +0000 RSTAdmin http://10172577.test.prositehosting.co.uk/?p=932 Marrianne studied business and finance before starting her career in the management office of The Queensgate Shopping Centre in Peterborough. Later she was lured by the sandy beaches down under and spent three years living and working in Australia.Once back in the UK, Marrianne worked in recruitment before becoming a hospitality manager in a company started with her partner Andy. Sadly, Marrianne’s career was cut short after her accident in 2004. Her focus is now driven by her quest for progress and the desire to help others.

My name is Kevin Hartie, I am 34 years old and I live in Essex. I’ve recently completed a Masters degree in psychology and hope to do further studies in this area in the future. During my studies I researched the psychological impact of spinal cord injury (SCI) on individuals, focusing specifically on participants that have adjusted successfully to SCI in spite of the challenging circumstances they face. Interestingly, some people show positive changes as a result of trauma and after initially suffering from stress, they eventually recover and following significant hard work and positive thinking, display signs of growth.  I am currently involved in some voluntary work for the Backup Trust, an organisation that supports SCI individuals, as a mentor and administration support for the mentoring team.

My story will be familiar to many people reading this. About 10 years ago, at the age of 23, I suffered a SCI playing rugby. I sustained a C4 fracture and instantly, my life changed forever.   The injury was severe and I spent many weeks on a life-support machine paralysed from the neck down. As time went by, I regained movement and was strong enough to breathe on my own.  After spending time in a spinal unit, I returned home to live with my parents and to a life which no longer seemed familiar to me. It took time to me to adjust and adapt to my SCI and I was fortunate to have the support, environment and importantly, time to adjust.

Since my accident I have managed to accomplish many positive things. I now live independently in a house I bought and renovated. I went skiing in Sweden with Backup – being in the cold meant facing up to one of my biggest fears since the injury. I returned to university and completed an MSc in psychology.  I trained as a mentor providing support to individuals that have SCI. I recently gave a presentation about mentoring and the work that Backup do, to a packed room at City Hall in London. With determination and support I’ve rediscovered my place in the world  and look forward to many future opportunities.

My name is Lianne. In 2001, at the age of 22, my life took a dramatic turn when I was injured in a car accident and severely damaged my spinal cord at the C5/6 vertebrae. I faced life with paralysis.

When I was first injured, waking up every day faced with this reality was far from easy. My life lost all meaning and my future seemed inconceivable. With the support and encouragement of family and friends, it took time for me to get used to a life after injury; to set new goals to pursue, to accept and adjust to the realities of my condition.

The turning point for me was meeting my physiotherapist, Sylvia Hogarth. She saw potential in me and this fuelled my motivation to do something positive to help myself. My own experience has taught me the value of positive thinking and self belief. By focusing on the challenges in front of me, I have learned how to live a fuller and more independent life.

I would very much welcome the opportunity to share my experiences and offer some guidance to anyone who finds themselves dealing with the realities of spinal cord injury.

Andrew has an active day to day roll in the trust and also crosses over his sporting skills to co-ordinate Marrianne’s recovery programmes. Inspired by trips to America and Europe, Andrew is very open minded in ways to help people with SCI progress and has regular dialog with some of the leading figures in the spinal world.

After helping to design Marrianne’s own living space, Andrew has been approached to work alongside a leading access architect from the London paralympics to help design therapeutic and inspiring living spaces for others with SCI.

As the long term partner of Marrianne Rooprai and after being by her side every day for the 7 months Marrianne spent in the spinal unit, Andrew has witnessed first-hand the devastation a spinal injury can bring. He is also fully aware of the progress that can be made through hard work and belief, something he is keen to share with others – ‘Keep an open mind’.

Many football players have been reported as suffering brain injury during games this season but Greater Binghamton’s pressconnects.com reports that professor Larry Bonassar of the university will use the funding to look into spinal injury in the athletes.

“There are many, many sub-threshold injuries that take place during the course of a game,” he told the news source.

“They are often written off by players, fans and organizations and won’t manifest until after the player’s career. Those are the kinds of injuries and situations we are trying to help with.”

This comes after the NFL proposed measures to limit brain and spinal injury among players including a reduction in the number of offseason workouts to reduce hitting during practises as well as a possible 18-game regular season.

Researchers from Johns Hopkins University have found that those who wear motorcycle helmets have a decreased chance of cervical spinal injury, according to a report on The Medical News.

It was also found that the risk of traumatic brain injury is decreased by 65 per cent and deaths are lowered by 37 per cent for those wearing a helmet.

According to the news source, study leader Adil Haider said the myth that wearing a helmet can cause more damage during a crash needs to be dismissed.

“Using this new evidence, legislators should revisit the need for mandatory helmet laws. There is no doubt that helmets save lives and reduce head injury. And now we know they are also associated with a decreased risk of cervical spine injury,” he added.

Meanwhile, research published in journal CNS Drugs found that by using a new method of delivery of anti-inflammatory therapy etanercept, they could reduce brain injury in stroke survivors years later.

Kevin has been a Trustee since RST formed and has helped to raise monies for the charity by organising events and bringing people together in the best interests of the charity. He was the first person to raise monies for the RST by shaving his head and has set the example for many others to follow.

A successful business women, working on projects for world famous brands such as Tesco, John Lewis, B&Q, Virgin Media and Virgin Atlantic , Zia is now at the cutting edge of London’s e-commerce fashion World. With a senior roll for one of London’s iconic department stores, Zia is perfectly placed to help raise the profile of RST.

Best friends with Marrianne’s since the age of 3, Zia was delighted to accept our invitation and more than happy to donate some time to a cause close to her heart. ‘Marrianne and I have been close friends since we were little, often being mistaken for sisters. She has always made me laugh, cry and everything in between but most importantly she is a massive  inspiration. The Rooprai Spinal Trust is a hugely important organisation and I’m honoured to help in anyway I can.”

Lots more events planned in 2012. Including ;

Fundraising Events;

• TBC

Foundraising Events :

• Thursday 1st November – RST Christmas cards on sale.
• Saturday 23rd November – RST Race Night, Ware.

Foundraising Events :

• Saturday 5th  October – The annual RST Ball at The Sopwell House, St Albans.
• Sunday 27th October – Great South Run

Fundraising events :

• Sunday 15th September 2012 – The Great North Run

Fundraising Events :

• Friday 9th August  – The RST Golf Invitational. Brocket Hall, Herts

Fundraising Events :

• TBC

Fundraising Events :

• Friday 3rd May  – The Border Cup. (Ryder cup style gold event for RST and Spinal Research)
• Saturday 4th May – The Masquerade Ball for RST, Cambridge.

Fundraising Events :

• Sunday 7th April – The RST 10k & 2k familt run. Hainualt, Essex.
• Sunday 21st  April  – The Virgin London Marathon
• Monday 22 April – RST beneficiary of Windsor Races Meet.

Fundraising Events :

• Saturday 9th March – Miami Beach Half Marathon
• Sunday 24th March – Spurs charity football match.

Fundraising Events :

• TBC

The Food and Drug Administration-approved, phase-1 trial is designed to test the safety of embryonic stem cells for this purpose and if successful, will lead to larger studies of the treatment, PhysOrg reports.

Led by neurosurgeon Gary Steinberg, the Stanford team is the third site to participate in the trial and will enrol up to ten patients.

According to the news site, he said: “Now we’re moving stem cell therapy into the clinic, which I feel is a tremendously important step. People are not mice or rats, and we can learn so much from clinical trials that we can never learn by studying animals.”

This comes after research, published in Science Express, found that cancer drug Taxol promotes regeneration of injure parts of the central nervous system nerve cells, meaning it could be used to treat those with spinal injury.

Posted by Timothy Walters

Javid has worked as a spinal rehabilitation specialist nurse for many years. Currently working at the spinal unit in Sheffield, Javid has a vast amount of experience and knowledge to share with others. We know first hand what a great guy and amazing nurse Javid is, which is why we invited him to join the team at RST.
Javid told us ” I knew what a courageous person Marrianne was after day one of her injury, she has inspired so many and it is a pleasure for me to help her help others”.

Do you have a question for Javid?

 Paul is a partner at law firm Serious Law. Serious Law specialise in one area of law – serious injury. This provides a series of unique benefits to their clients, as all lawyers working on their behalf are dedicated to acting in situations such as theirs. Serious Law have built a team, and range of services which sets them apart from other law practices. Their in-depth knowledge ensures that clients receive the correct financial awards, along with the best medical, rehabilitation, accommodation and transportation solutions.

Paul is head of the catastrophic injury team and has over two decades of experience dealing with those affected by spinal injury. Paul is an expert in understanding the detailed medical and legal process requirements of spinal injury cases and has dealt with some of the largest and most high profile to be brought before the courts. Do you have a question for Paul?

My name is Adam Harrington. I’m a Building Services Engineer and Managing Director of Mount Pleasant Building Services.  One of the departments I oversee in our organisation deals with the very specialised area of accessibility and therapeutic living for those with spinal cord injury. I’m extremely fortunate to have some gifted and driven people on my team, including our Building Surveyor Simone. Simone is passionate about her work and is at the forefront of thinking for accessible living. With 20 years experience, Simone has also consulted on the 2012 Paralympic games.

I’m also proud to mention that Marrianne and Andrew, from RST, help to advise our team and bring their personal experience and empathy to our projects.

If you have a question relating to work that you might need in your own home or need pointing in the right direction, please feel free to drop me a line. I’m happy to donate some time to a great charity like RST.

“At Back Up we know a spinal cord injury can be devastating, but we believe that it shouldn’t prevent anyone from getting the most out of life”.

 This long established and well respected charity offers a number of services for people affected by spinal cord injury. The mentoring service is something that we at RST are particularly interested in and would highly recommend others to try. Whether it’s you or a loved one who has an injury the service has so much to offer.

“Through our accredited mentoring service, we will link you up with a trained volunteer mentor who is a similar age and injury level to you or a family mentor whose relative has a similar injury. Our mentors come from all walks of life and we can often link you with a spinal cord injured peer or relative whose life experiences are relevant for you”.

You can check out more details on the Back Up website. We have also spoken to the guys at Back Up about potentially sponsoring people to undergo this brilliant service. We hope that from 2012 onwards we can make this happen and do our bit to aid the great work at Back Up.

A link to the interview will appear here soon. ( A slight delay due to Jonathans work load…but it is on it’s way!!  Sorry guys)

The Denver Post reports that Karina Vegas was shot in the back outside her high school in December when on the street talking with friends.

According to the teenager from Denver, a car containing several people passed and then did a U turn in an attempt to run the group over. Having failed, someone from inside the vehicle fired a shot into the crowd.

The newspaper reports that Vargas has told family and friends that she would walk again, adding: “I don’t see myself like this in a wheelchair for the rest of my life.”

This comes following news that congresswoman Gabrielle Giffords who suffered severe brain injury after being shot in the head has been moved to a rehabilitation facility.

According to doctors, the success of her recovery depends on the degree of her injury along with the proficiency of her therapists.

Posted by Paul Breen

The Osborn Spinal Unit

The Princess Royal Spinal Injuries centre, housed in the Osborn building and often referred to as the Osborn Unit, was opened in 1994. It is the second largest spinal centre in the country.

Approximately 200 dedicated staff care for an average of 2600 outpatients and 2000 inpatients. One former inpatient (and now an outpatient)  is our very own Marrianne Rooprai. It is Marrianne’s wish that RST make the Osborn Unit the place to start our national support; support that will not only express Marrianne’s gratitude, but will also help future patients.

Information Packs

RST currently offer free information packs to patients at the Osborn unit, ’Rooprai Spinal Trust information packs’. 
The packs are designed to share the experiences of Marrianne and her family in order to help others.  The thinking behind the packs is to give an alternative to the medical facts and figures and to provide a practical day-to-day element. 

Just the beginning

This is only the first edition and it is hoped that the pack will constantly evolve. “We would like the contents to grow and grow. Others who have witnessed the horrors of SCI first hand will be invited to share their points and experiences for later editions” said Marrianne.

Please call 08000 21 30 34 or email us on info@rstrust.com to receive your free copy of the RST Information pack or if you have something you would like to add.

 Equipment

In addition to the information packs we like to help the unit out from time to time with pieces of equipment that might make the lives of the patients and staff a little easier. Here you can see one the units most experienced and inspiring nurses, Javid, receiving a laptop from our trust manager. Below the nurses show off the digital camera the trust supplied, to help them monitor pressure sores of patients.

We are currently working on plans to offer an annual ‘inspiration award’ to someone newly injured who is determined to try and progress.  The award will be a piece of rehab equipment.  We hope to have more news on the idea by the Autum…so watch this space.

Other Units

If you would like us to offer support to a unit you are particularly close to, please drop us a line. Perhaps you work in a surgery or clinic and would like to display some information about the trust? We are always keen to expand and help others.

RST is only a very small charity but we have plans to grow and to help more and more.  The beauty of our current situation means that we have no paid staff and no extravagant offices to pay for, we get by simply on the generosity of spirit; a generosity that allows as much of the money we raise as possible to go directly to helping us achieve our objectives.      

 We receive no kind of funding, we just try to raise our own money and this is how…..      

• Individual Fundraisers

 Since our launch in 2005, we have had some amazing individuals give up their time to not only raise funds for us but also to help us raise our profile – from marathon runners, skydivers and triathletes, through to cake bakers, present wrappers and head shavers! Although it might be a cliché, every penny really does help.      

So, if you fancy doing something but aren’t sure where to start, please drop us a line.  We can give you advice, sponsor forms, tee-shirts, collection pots, we can set up an online giving page for you …… whatever you need, we can help.      

•   RST Events

Rather than pestering people to simply ‘give’ their money away, at RST we do our best to organise a mixture of events where people can enjoy themselves whilst helping a great cause.    

 We have a number of annual events in our calendar and we have plans to offer more and more, which you can see on our diary page.  If you’d like to stage an event to support us, please let us know. We will do our best to give you all the support and advice you need.      

• Corporate Partners

In the past we have be picked as the charity of choice for a number of large organisations, including Barclays Plc, Virgin Media and More Than Insurance.  Porsche continue to support us as well as many local organisations.  If your company would like to be involved with RST, we can offer as much or as little support as required when it comes to fundraising with your team. Please keep us in mind!      

• Monthly Direct Debits

We have a growing number of supporters who love the work that we do but, due to their hectic lifestyles, simply find it hard to find the time to be involved with events. Instead, these guys choose to support us via monthly direct debit donations. From £2 to £50 and beyond, every bit really makes a difference and gives us a real stable base to work from. If direct debit interests you, please fill in the direct debit form and post it back to us.      

Our 10k & 2k run is always a great event every spring.

 Thank you for taking the time to read through our site. In these difficult times, we totally understand it is hard to give money away.  Perhaps instead you can help us by helping to spread the word of RST.  Follow us on Facebook, follow us on Twitter, send the site link to your friends…it all helps. Many thanks – RST

Researchers from Spine Midwest in Jefferson City, Missouri, investigated the safety of two lumbar interbody fusion procedures in octogenarians and found that the minimally invasive option resulted in fewer complications, blood loss/transfusion rates and hospital stays.

Twenty patients underwent open posterior lumbar interbody fusion (PLIF) and 40 participants had minimally-invasive extreme lateral interbody fusion (XLIF), with XLIF patients found to be discharged from the hospital an average of four days earlier than the PLIF patients.

In addition, six deaths were seen in the PLIF group, three of which were within the first three months after the operation, while one death occurred in the XLIF group, said the study published in journal Spine.

Meanwhile, Ian Semmons, chair of Action on Pain, has said that healthcare professionals should receive more training on how to help patients who experience chronic pain, which could help those with spinal injury.

Posted by Timothy Walters

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