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Jun
15

An over-reliance on families to provide care and the need for long-term access to rehabilitation have been highlighted in a new research report on living with Acquired Brain Injury.

Commissioned by Acquired Brain Injury Ireland (ABI Ireland) and launched today, the report, Getting my Life Reset, aimed to capture the impact and experience of brain injury and allow a wider understanding of living with acquired brain injury. Rarely, if ever, do we hear the voice of the person living with a brain injury.

Barbara O’Connell, CEO of ABI Ireland said:

“This report lifts the lid and gives us an insight into what life is like for people with a brain injury. It illuminates in very clear terms the barriers faced, the lack of brain injury specific services and the difficulties in trying to access appropriate services. There is also a clear message of hope from the research that people living with brain injury display the ability to adapt and be resilient even when faced with such adversity”

The findings, based upon detailed interviews of people with acquired brain injury, highlights that access to professional rehabilitation services is critical for recovery and access needs to remain available in the long-term as needs change.

The report also identified an excessive burden on families. While families provide essential support and care, they are not skilled and equipped to provide the rehabilitative interventions which have a major impact on people’s recovery and outcomes.

Minister of State with special responsibility for Disabilities, Finian McGrath attended the launch and urged policy makers to read this report and be inspired by the lived experience of people with acquired brain injury.

“The importance of family emerges particularly as the social circle of the person becomes depleted by their injury. Families must be supported by the provision of services. I am happy to say that the Programme for a Partnership Government includes a commitment to publish a plan for advancing Neuro-Rehabilitation Services in the community.”

Brian Hogan from Limerick was also in attendance. He was assaulted on a night out in 2009 and had a major bleed in his brain.

“It has been six years since I acquired my brain injury and it has been a very been a challenging time. However, I am very determined. I give talks to schools, community groups and other interested parties about my story to educate about the dangers of what can happen due to a head injury on a night out”.

“I strongly welcome this research – which tells the story of people’s lived experiences. It tells policy makers and service providers that better access to rehabilitation services greatly helps people to live the best lives they can. It is neither fair, not often in the best interest of rehabilitation, to over burden families. An ABI is a complex condition and health services need to be able to adapt to the different needs of people at different times.”

Stephen Shorthall fell down a flight of stairs in 2014 and went into an induced coma. He highlighted the major benefit of professional rehabilitation which he received.

“As important as families are, as mine surely was, there are areas that they cannot cover. Many patients feel burdensome and will not complain in case it is seen as being ungrateful. It cannot be understated how beneficial a professional is. It is somehow more acceptable to express your natural frustrations and fear to a professional than to a loved one.

“Many people with brain injuries go without therapies which are not expensive, in part due to lack of availability, and in part because they may not be able to speak up, or not able to speak at all.”

Report Co-author Dr. Stephen Walsh said: “Given the very different short, medium and long term needs of those affected by ABI, there is a need for a range of health services and supports for both the individual with ABI and their families. Optimum re-integration and recovery is attributed to a combination of strong psychological resources, social support and appropriate professional services.”

Five key themes in the report are:

1.     The role of families in supporting those affected by ABI, particularly as a consequence of their often-reduced social worlds

2.     The difficulties encountered by those affected by ABI in navigating and securing support services

3.     The variability and complexity of the needs of those affected by brain injury

4.     The role of group activity as a means of social engagement and meaningful doing

5.     Adaptation and resilience of those living with brain injury.

To download the report in full click: https://www.abiireland.ie/wp-content/uploads/2017/05/ABII-Getting-Reset-Report.pdf

Jun
14

Family carers, staff and people living with Acquired Brain Injury celebrated a special walk on Dun Laoghaire pier to mark National Carers Week.

The walk was organised by Dun Laoghaire based Acquired Brain Injury Ireland (ABI Ireland) which was one of 11 national partner organisations supporting National Carers Week.

Participants walked from ABI Ireland’s Northumberland Hall Clubhouse in the Town to the East Pier to recognise the contribution of Ireland’s 360,000 family carers.

Also to mark Carers week, Dun Laoghaire Rathdown County Council turned the lights of the Town Hall blue – the colour to symbolise carers.

DLR Cathaoirleach Cormac Devlin attended the switching on of the ‘Carers Week lights’ and commended the huge contribution of family carers. He also wished continued success to ABI Ireland which benefits thousands of people with brain injury and their families across the country.

ABI Ireland CEO Barbara O’Connell thanked all who took part in the walk, and family carers across Dun Laoghaire Rathdown for their dedication to loved ones who live with Acquired Brain Injury.

“National Carers Week is to recognise the huge contribution family carers make to all of our lives. We want to say a big Thank You to them, and ABI Ireland stand 100% behind them in the work that they do.

To mark the week, ABI Ireland held local events across the country.

It also launched a new national research report on experiences of people living with a brain injury. It is the first time that research into peoples’ lived experiences of brain injury in Ireland has been published.

The report – Getting my Life Reset – found that access to professional rehabilitation services is critical for recovery and needs to remain available in the long-term as people’s needs change.

The research also identified an excessive burden on families. While families provide essential support and care, they are not skilled and equipped to provide the rehabilitative interventions which have a major impact on people’s recovery and outcomes.

Ms. O’Connell said the report provides valuable information for policy makers and service providers on planning and improving services for people with brain injury.

To find out more, or to support ABI Ireland’s work, please go to www.abiireland.ie.

Together with ABI Ireland there are 11 national organisations who are partners in National Carers’ Week including: Family Carers Ireland, Alzheimer’s Society of Ireland, Irish Cancer Society, Disability Federation of Ireland, MS Ireland, Inclusion Ireland, Irish Hospice Foundation, St. Michael’s House, Special Needs Parents Association and Care Alliance Ireland.

May
24

Public encouraged to take part or organise events to support National Carers Week June 12-18

Dun Laoghaire is to light up blue to support people with brain injury during National Carers Week, with organisations and the public urged to support the event.

Dun Laoghaire based Acquired Brain Injury Ireland (ABI Ireland) is one of 11 national partner organisations supporting the campaign, which takes place from June 12-18.

To mark the week Dun Laoghaire Rathdown County Council will ‘light up blue’ the County Hall building on Marine Road in the town.

Cathaoirleach Cormac Devlin this week joined with ABI Ireland, people who live with brain injury and family carers to switch on the ‘blue lights’ and launch the initiative.

From June 12-18 events will take place nationwide to celebrate and recognise the contribution of Ireland’s 360,000 family carers.

ABI Ireland is hosting a Carers Walk from Dun Laoghaire Town to the East Pier on Tuesday 13th at 11.30am.

ABI Ireland CEO Barbara O’Connell invited families and supporters to join the ABI Ireland walk and also invited other services who work with family carers to host their own walks to support National Carers Week.

“National Carers Week is a great opportunity to raise awareness and recognise the huge contribution carers make to all of our lives. As the colour scheme for National Carers Week is blue, we invite anybody taking part to wear blue.

“If other organisations want to organise walks then multiple events could happen simultaneously at 11.30am on June 13th across Dun Laoghaire Rathdown County which would clearly demonstrate our gratitude to and celebration of family carers.”

To take part in ABI Ireland’s walk, or host a different walk, or receive National Carers’ Week merchandise contact ABI Ireland’s Layla Moroney at lmoroney@abiireland.ie or 086 410 3681.

On Thursday the 15th a coffee morning is taking place in Southside Women’s Action Network (SWAN) in Loughlinstown. Furthermore, ABI Ireland will be launching a new national research report during the week on the experiences of people and their families of living with a brain injury – and how services can be improved.

More information is available at www.carersweek.ie. Also see Facebook: www.facebook.com/nationalcarersweek and Twitter: @careallianceirl and #carersweek

To find out more or to support ABI Ireland’s work with people with acquired brain injury and their carers, please go to www.abiireland.ie.

Together with ABI Ireland there are 11 national organisations who are partners in the week including: Family Carers Ireland, Alzheimer Society of Ireland, Irish Cancer Society, Disability Federation of Ireland, MS Ireland, Inclusion Ireland, Irish Hospice Foundation, St. Michael’s House, Special Needs Parents Association and Care Alliance Ireland.

Further Information
Ronan Cavanagh, Cavanagh Communications: (086) 317 9731.
www.abiireland.ie

Mar
06

Miriam O’Callaghan highlights devastating effect of brain injury

Better community rehabilitation services called for during Brain Awareness Week

Better community rehabilitation services, including dedicated neuro-rehabilitation beds and specialist community supports, have been called for – as Brain Awareness Week kicks off today.

To help improve services, ‘Bake for Brain Injury’ events will be taking place across the country this week and ABI Ireland CEO Barbara O’Connell called on the nation’s bakers and cake eaters to join forces.

“To raise some dough for people with brain injury, simply bake for your friends, or work colleagues, or school friends, and ask them to donate for their cake. People can visit www.abiireland.ie, or donate €2 by texting BUN to 50300.”

The campaign is being endorsed by Broadcaster Miriam O’Callaghan who called on people across Ireland to join her in making and sampling some tasty bites to support much needed services.

“It is very important to raise awareness of an injury that could happen any of us at any time. Brain injury is devastating, but the right neuro-rehabilitation can dramatically improve lives. We see this through what ABI Ireland provides in all parts of the country.

“We need to ensure these services can continue to be provided for anyone who needs it, and also further developed to meet growing demand into the future,” she said.

ABI Ireland provides community-based neuro-rehabilitation services and advocates for the 13,000 people who acquire a brain injury every year.

To improve services for people affected by acquired brain injury Ms. O’Connell called for dedicated regional neuro-rehabilitation services, together with specialist community supports, so that people can transition in a timely manner to proper care in the community.

“Only a very small minority of people with a brain injury receive rehabilitation – mainly through ABI Ireland. Most either enter a nursing home which is not equipped to meet their needs, or are cared for at home by families who have no expertise, information or support.”

The campaign can be followed on Twitter using #bakebreak.

Further Information
Ronan Cavanagh (086) 317 9731.
www.abiireland.ie

Feb
15

Investment in community rehabilitation would free up hospital beds.
Community based rehabilitation services are urgently needed for people with brain injury and their carers – and to reduce hospital waiting lists – a health conference has been told today.

Speaking at a national conference for carers, Acquired Brain Injury Ireland CEO Barbara O’Connell said Irish neuro-rehabilitation services are under-developed and under-funded – which contributes to the unacceptable waiting times for hospital beds.

“A part of the ongoing hospital waiting list problem is that some people with an acquired brain injury, who need neuro-rehabilitation, remain in hospital beds for long periods as there are no appropriate step-down services for them.

“We need dedicated regional neuro-rehabilitation services, together with specialist community supports, so that people can transition in a timely manner to proper care in the community. Only a very small minority of people with a brain injury receive rehabilitation. Most either enter a nursing home which is not equipped to meet their needs, or are cared for at home by families who have no expertise, information or support.”

“Ireland has the lowest number of Consultants in rehabilitation medicine anywhere in Europe with an estimated 13,000 people acquiring a brain injury each year. Not only would developing rehabilitation services speed up access to hospital beds for all patients generally, it would also support thousands of family carers who provide unpaid 24-hour care for the vast majority of those with a brain injury,” she said.

Ms O’Connell was speaking at the ABI Ireland organised conference Building Resilience: Valuing myself as a carer at Croke Park today, which was attended and addressed by the Minister for Health, Simon Harris.

Research carried out by ABI Ireland identified a high level of anxiety and depression among family members who, due to the life changing circumstances of a loved one, become unexpectedly cast into the role of full-time carers.

One carer, based in the Midlands, told how he gave up his full-time job to look after his partner as there was no other option:

“It was soul destroying that we had to wait seven months for a bed in the National Rehabilitation Hospital (NRH), while during all that time she occupied an acute bed in the General Hospital. However, once my partner was discharged from the NRH, apart from four hours of occupational therapy from ABI Ireland every week, there is nothing. I was left to cope on my own and this gap in services needs to be recognised and to change.”

The conference included a keynote address from Clinical Psychologist and Mental Health Advocate Dr. Eddie Murphy who said:

“Families and carers are part of the unseen trauma of an acquired brain injury. They get burnt out and need the support of a health system. They are saving the nation a fortune through their heroic work. This cannot continue we need to plan and resource rehabilitation services for the future.”

The event was facilitated by broadcaster Miriam O’Callaghan. It included workshops for carers on practical items such as legal issues, minding yourself and managing stress and attention and memory challenges.

Commentary from the conference can be followed on Twitter at #valueme.

Feb
09

Conference offers brain injury carers opportunity to learn and to be pampered

Family carers who care for a loved one with acquired brain injury are being encouraged to attend a national ‘carers conference’ next week in Croke Park.
The conference Building Resilience: Valuing myself as a carer takes place next Wednesday (February 15th) and aims to provide family carers with greater levels of practical knowledge and understanding of brain injury.

Organised by Acquired Brain Injury Ireland, there will be expert speakers and workshops on legal issues, minding yourself, managing stress and memory challenges.

The conference will be addressed by the Minister for Health Simon Harris and facilitated by broadcaster Miriam O’Callaghan. A Keynote Address will be delivered by Dr. Eddie Murphy, psychologist with RTE’s Operation Transformation.

Important issues for carers, the challenges they face and what actions government needs to take will be set out by the CEO of Acquired Brain Injury Ireland, Barbara O’Connell.

During the day practical and helpful workshops for carers will be run including:

• What you need to know about legal issues, Solicitor Ann McGarry
• What you need to know about minding yourself and managing stress, Dr, Caroline McGrath and Teresa O’Boyle, ABI Ireland
• What you need to know about attention and memory challenges, Dr. Brian Waldron.

There will also be pampering and relaxation facilities for carers and a performance by the High Hopes choir which is made up of homeless people. There will also be prizes in recognition of the contribution that carers and families make in communities. There is a registration fee of €10.

ABI Ireland CEO Barbara O’Connell said the conference will also be an informative, social and fun event and she encouraged anybody across the country, who cares for someone with an acquired brain injury, to attend: “As well as dealing with the serious issues, the day will also include plenty of opportunities for carers and families to meet with other family members and also to experience a little on-site pampering! “

To find out more go to www.abiireland.ie, or call 01 280 4164. Commentary from the conference can be followed on Twitter via the hashtag #valueme.

Sep
08

My name is Yvonne Rossiter. I am a 28 year old secondary school teacher from County Wexford.

On an average day in March 2015 I was in work and I felt a strange pain on my right hand side. After multiple trips to Wexford General Hospital and multiple diagnoses from possible collapsed lung to chest infections, I was told I had a Pulmonary Embolism, which is a blood clot in your lung. To dissolve this clot & to prevent any future clotting I was placed on an anti-coagulant called Warfarin for a six-month period. I had to have blood tests on a weekly basis in order to ensure that I was on the correct dose.


School broke for the Summer holidays & I was having the time of my life. I had a truly amazing family holiday to Iceland in July, spent the August bank holiday in Mayo with friends and was really excited as my parents were due to have a joint 50th birthday party on August 8th but unbeknownst to me, this was not meant to be.


I met a close friend for lunch on August 5th and I remember getting home that night but that is now the last thing I remember for a few weeks. I went to bed that night (August 5th) and overnight developed a large intracerebral brain hemorrhage, due to the Warfarin. I was rushed to Vincent’s University Hospital the following morning where they gave me vitamin K to counteract the blood thinning effects of the Warfarin. I was then rushed to Beaumont hospital and on Friday August 7th 2015 I had a Craniotomy, and was then placed in a medically induced coma. A piece of my skull was removed during the procedure & this was placed in my abdomen to keep the piece of bone alive & sterile.


When I woke up at the end of August I was convinced I was still in Iceland, which in a way was great as I had an extended trip! Unfortunately, my memories of this new portion of my trip were mine alone and my family had not had quite as good a trip as I had! My body took some time to adjust after waking up and I couldn’t understand why my body couldn’t do simple things like it used to, I couldn’t hold my balance or even sit upright in bed, I couldn’t read the smallest of articles or hold a pen , all things needed for teaching! As someone who is quite driven and organized, this was a very frustrating time but I was determined to get back to myself as soon as humanly possible. The first date I can properly remember was my mothers Birthday (August 19th). I had to get a friend to write on her birthday card for me but through physio & occupational therapy learnt how to read write & walk again, something which I was extremely nervous about as the piece of skull was still in my abdomen!


The staff in Beaumont hospital were outstanding, the team that looked after me from my neurosurgeon to all the nurses and careers on Adams McConnell ward were second to none & I will never be able to repay them for all they did for me.


I was sent back to Vincent’s hospital and stayed there until September 5th when I was sent home. This is when my recovery definitely accelerated as there is something about being finally able to sleep in your own bed which recovers some confidence. I returned to Beaumont on November 2nd to get the bone flap put back in place and I was home two days later. I had an extremely fast recovery from such a bleed and I returned to work before the Christmas holidays in late December 2015. I could have taken more time off work if I had of wanted to but I was so ready for everything to go back to normal & I was so happy I went back when I did. I knew I was ready.


My-lucky-horseshoe-scar-when-I-woke-upThe-scar-on-my-abdomen-where-the-bone-flap-was-placedNovember-3rd-after-the-bone-flap-was-replaced

My lucky horseshoe scar when I woke up, the scar on my abdomen where the bone flap was placed, and after the bone flap was replaced.


Recovery is not just a physical process but also psychological. As I write this article is it the one year anniversary of my brain hemorrhage and being completely honest it’s very emotional writing all this down for the first time. As I have been focused on getting life back to normal, it is only now that I am realising what I have overcome in such a short space of time and I am so proud and grateful to have recovered as quickly as I have.


August-3rd-2016-Giants-causeway

August 3rd 2016, at the Giants causeway

My intent with writing this is to show that whilst recovery times vary, there is always hope that life can return to normal in a relatively short space of time, although it may be hard to envision it when asking friends and family to read and write for you. Last year on August 5th I was in the middle of a fight for my life, whilst this year I was sitting on the Giants Causeway feeling the most comfortable I have ever been within my own body & mind.


I had a fantastic network of friends and my close family around me, which definitely helped with recovery. I am also certain that ensuring I kept a positive mindset and goal in mind kept my recovery going at speed. Very early on in my recovery I had given myself the goal of being back to work before Christmas break, and I could not be happier that I managed to reach that goal.

So, to conclude I suppose one of the main things I have taken from this experience is that whilst life is unpredictable we are still the drivers of our own ship, and even if your ship takes you on a coma tour of Iceland while family and friends worry at your bedside, there is still hope of a return to not only normality, but the ability to live the best life you can. I certainly intend to do so.

Sep
07

Acquired Brain Injury Ireland is calling on the Government to introduce a dedicated programme of investment in services for people with acquired brain injuries, and to urgently action and honour the commitments in their own Neuro-rehabilitation Strategy. The Neuro-rehabilitation strategy 2011-2015 outlines the roadmap needed from acute hospital stage to community rehabilitation and recovery. This strategy has not yet been implemented.
The current Acquired Brain Injury (ABI) pathway is extremely fragmented with extensive limitations due to the lack of neuro-rehabilitation services available. Addressing the gaps in services and the lack of a seamless pathway is essential for any reform within the health service. The lack of a neuro-rehabilitation pathway means that people who despite surviving the major trauma of a brain injury, end up living in inappropriate settings such as nursing homes, community hospitals and at home where families are unable to cope.
Acquired Brain Injury Ireland CEO Barbara O’ Connell said “More and more people are surviving brain injury but due to the lack of suitable services at the different stages these people are very often only left to exist. Those living with ABI and their families are forced to live on margins of our society. Many, despite their young age, are consigned to live in highly inappropriate settings such as nursing homes and community hospitals or at home where families don’t understand what is wrong with them, or what they can do to help. In Ireland neuro-rehabilitation services are patchy and varied across the country; it’s a lottery as to who receives what rehabilitation and whatever the outcome will be. This is having a detrimental impact on the lives of people with ABI and their families. This cannot continue”.
ABI Ireland’s already established community brain injury teams provide rehabilitation in the home for those who cannot get a bed in the NRH, or who have been discharged from the NRH or an acute hospital. An increase in community rehabilitation would allow organisations such as ABI Ireland increase their service capacity, reduce waiting lists and decrease the demand for hospital beds. As a result the success of rehabilitation will surge and lives transformed.
Early interventions play a key role in brain injury rehabilitation, as it increases the chances of success in an individual’s recovery. The lack of timely and appropriate rehabilitation services means valuable recovery time is lost and the outcomes for the individual are not optimal. A dedicated neuro-rehabilitation pathway is needed to provide the most efficient rehabilitation to those who acquire a brain injury.
Don’t Save Me; Then Leave Me. Rehabilitation is a Right, Not a Request is an advocacy campaign developed by ABI Ireland continuously calling for a dedicated programme of investment for people with an ABI. For more information see www.abiireland.ie
-ENDS-

Sep
07

Early interventions play a key role in brain injury rehabilitation as it increases the chances of success in an individual’s recovery. A dedicated neuro-rehabilitation pathway is needed to provide the most efficient rehabilitation to those who acquire a brain injury.
ABI Ireland’s community rehabilitation provides rehabilitation in the home for those who cannot get a bed in the NRH, or who have been discharged from hospital. An increase in community rehabilitation would reduce the demand for hospital beds and surge the success of rehabilitation, following early intervention.
The Neuro-rehabilitation strategy 2011-2015 outlines the roadmap needed from acute hospital stage to community rehabilitation and recovery. This strategy has not yet been implemented. ABI Ireland is calling on the government to introduce a dedicated programme of investment for people with acquired brain injuries and urgent implementation of the Neuro-rehabilitation Strategy.

Jun
23

10 Years of Empty Promises as Successive Governments Fail to Invest in Rehabilitation Services

Mansion House, Dublin: Organisations representing people with neurological organisations are calling on the new Government to tackle the critical lack of rehabilitation services in Ireland.
The Neurological Alliance of Ireland (NAI), the national umbrella for neurological not for profit organisations, has teamed up with fifteen of its member groups representing conditions such as stroke, acquired brain injury, multiple sclerosis, Parkinson’s and Huntington’s disease to launch a nationwide campaign entitled “We Need Our Heads Examined”. The campaign is calling on the government to take action and prioritise the urgent need for neuro-rehabilitation services, for the 25,000 people each year who need them.
Speaking at the launch of the campaign was Professor Mark Delargy, Clinical Director at the National Rehabilitation Hospital, he said “Rehabilitation services in Ireland are completely underdeveloped, not everyone who needs to can access vital specialist rehabilitation in a hospital setting, and when they are discharged they often receive little or no additional supports in the community. For many there is no other option than to be inappropriately placed in a nursing home with little chance of gaining any independence”.
Ten years of empty promises have seen no investment in services, despite the publication of a National Neuro-rehabilitation Strategy in 2011. Since then nothing had been done and no progression made.
Reinhard Schaler, a father whose son Padraig suffered an acquired brain injury (ABI) in a road traffic accident, and was forced to travel to Germany for treatment said, “We are condemning people with acquired brain injuries to a future of neglect, disability and lost opportunity. We cannot continue to deny access to vital services and we can no longer be expected to travel overseas to avail of them. The intervention period is crucial for a neurological condition, yet due to the lack of neuro-rehabilitation services in Ireland this ‘intervention period’ is a loss for many”.
Also speaking at the launch was Alexis Donnelly, a person living with MS for over twenty-five years who has known a lifetime of inadequate services. He said “Ten years of inaction has brought about extraordinary despair for so many of us. People living with a neurological condition cannot just be left to deteriorate and told the health system won’t provide for them. We need access to a range of quality services and supports to enhance our quality of life and well-being. This is not just bad healthcare it is bad economics”.
The NAI and its member organisations are calling on the government to overcome a decade of broken promises and honour their commitment to publish an implementation plan for the National Neuro-rehabilitation Strategy; dedicate investment to the development of new services from hospital to home, for those living with a neurological condition.
The campaign ‘We Need Our Heads Examined’ launched in the Mansion house today. For more information or to support this campaign see www.nai.ie or tweet #Rehab4Ireland @nai_ireland

Campaign Member groups
Acquired Brain Injury Ireland www.abiireland.ie

Ataxia Ireland www.www.ataxia.ie

Chronic Pain Ireland www.chronicpain.ie

Multiple Sclerosis Society of Ireland www.ms-society.ie

Headway www.headway.ie

The Rehab Group www.rehab.ie

Parkinson’s Association of Ireland www.parkinsons.ie

The Alzheimer Society of Ireland www.alzheimer.ie

Irish Heart Foundation www.irishheart.ie

PSPA Ireland www.pspaireland.ie

Huntington’s Disease Association of Ireland www.huntingtons.ie

Brain Tumour Ireland www.braintumourireland.com

Enable Ireland www.enableireland.ie

Spina Bifida Hydrocephalus Ireland www.sbhi.ie

Muscular Dystrophy Ireland www.mdi.ie

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