Help Fund the ONLY Treatment for Children with FATAL Batten Disease
Batten Disease is a neurodegenerative life limiting condition. Children appear healthy at birth and symptoms for CLN2 Batten Disease begin between 3-4 years old. Children lose the ability to walk, talk and eat. They lose their vision completely and develop childhood dementia as well as uncontrollable seizures. The disease progresses rapidly with children becoming completely dependent on parents/carers by the ages of 5-6 years old. The life expectancy of a child with CLN2 Batten Disease is between 6 and 12 years old. However there is hope, a select number of children in the UK have been receiving a drug called Cerliponase alfa. This drug has shown to slow down the progression of the disease and in some children even stabilise it. Children aged 7 & 8 years old who are receiving treatment are still able to walk and talk, whereas those who do not receive treatment will lose these skills around 5 years old. . This treatment is currently available to patients in Europe but is not currently funded by the NHS in the UK. The drug is currently going through the NICE process and currently NICE and NHS England have made the decision not to recommend this treatment be available children in the UK with CLN2 disease. There are currently 4 children in the UK who have no access to treatment and there are 10 children who could potentially be left without treatment if the treatment is not recommended by NICE. Lucy Carroll who has 2 children receiving treatment says: 'We are extremely disappointed and utterly heartbroken with this decision. We are witnessing first hand the positive impact the treatment is having on both of our children. The process in which these decisions are being made is painfully slow, whilst children in the UK are left suffering yet other countries are providing treatment. We now need your help and support to allow us to be the voice for all children with CNL2 Batten Disease and get this decision changed.' Gail Rich, a parent of 2 girls receiving treatment says: "We cannot express how devastated we are by the news that the NICE committee have made the unthinkable decision not to recommend this treatment be available children in this country on the NHS. This decision is cruel, unjust & simply wrong. This treatment works. It has been proved to work." All of the amazing children currently receiving treatment around the world are living proof that this treatment works. We only have to look at our two daughters to see that this treatment works. How can they possibly say no? Every child deserves a chance. This treatment should be available to children in this country. Knowing it is now a recognised treatment in other countries across the world proves they are wrong & would be wrong to deny our children in this country, access to something that has been proven to work. Please sign this petition Together we WILL make a difference.
Don’t shut down Parliament! #StopTheCoup
Breaking news: The Government is asking the Queen to suspend Parliament in September. With the Brexit deadline around the corner, it means MPs won’t have time to pass laws to stop a no-deal Brexit or scrutinise the Government at one of the most critical times in our country’s history. This is an outrage and undermines the very idea of democracy. With just a few weeks before Brexit, we need politicians in Parliament, doing their jobs to make sure we leave the European Union in the best possible way for the sake of future generations. As a young person, it feels like my future is being played with. But the future of our country isn’t a political game. I’m looking to our politicians to make sure they make decisions which have been properly thought through and debated. That’s why I’m calling for Boris Johnson not to suspend Parliament to ram through an undemocratic Brexit, which will do nothing to provide closure and bring the country back together. This is the time for MPs to showcase bold and decisive leadership. Please help me by signing this petition! #StoptheCoup
STOP THE LEGALISED KILLING OF RAVENS AND 65+ OTHER SPECIES OF WILD BIRDS IN ENGLAND
STOP THE LEGALISED KILLING OF 65+ SPECIES OF TREASURED AND ENDANGERED WILD BIRDS - IN ENGLAND Natural England, the government sponsored agency, is issuing licences to kill 65+ species of birds, many red and amber listed and endangered. We want:- to thoroughly overhaul Natural England and its licensing process, making it fully transparent and accountable as a public agency, if necessary replacing it entirely with a totally independent body. to arrange a meeting with the environment secretary to discuss the concerns of the British public over Natural England's officially sanctioned killing of wild birds. to revoke licences currently issued until each has been independently reviewed. to examine future licences and ensure that they are not issued for spurious and/or vague reasons. to instigate a rigorous process to follow up on licences issued, to verify that the licensees are complying with strict criteria. *since starting this petition, I discovered through a Freedom of Information request that Natural England are issuing licences to kill 65+ species of native birds, many red and amber listed and endangered.So, I decided to extend this petition to include these other birds.What began as a campaign to save Ravens is now a battle to protect all British birds from the dubious licencing activities of Natural England. ***10th April 2019***In a landmark for our petition, I am pleased to say that I have had a useful discussion with the Director of Operations at Natural England regarding our concerns over their licencing system. Although we did not reach agreement over several matters, one very positive development has resulted from our conversation. Starting this year, Natural England have promised to publish an annual list of all licences issued, including species, figures and reasons given for granting each licence. This is a major breakthrough as it will allow public scrutiny of some of the agency's activities.But many issues are unresolved, particularly with regard to transparency over licence applications and monitoring of licences granted. I am having ongoing discussions with Natural England over the issues raised by our petition and I am continuing to press for more detailed information.Further updates in due course. Thank you all for your continued support - it is so important to keep sharing the petition - the more signatures we get, the more chance of bringing about change. (The original petition is below, it has since been extended and amended to include all the British birds that are being killed through Natural England's licences) The Government sponsored agency Natural England, under direction from environment secretary Michael Gove, has issued licences allowing farmers in England to shoot ravens.The farmers say that the rare birds are a threat to lambs and piglets. Ravens are a protected species.They are only just beginning to recover from long term decline and still number less than 8,000 pairs in the whole of the United Kingdom. They should not be killed. Allowing Ravens to be legally killed under licence may severely impact on the future survival of the species.The move will do nothing to improve the Government's already tarnished reputation on environmental matters. The licences have been issued to farmers in five counties, but as we have seen from the badger cull, our fear is that this appalling plan could be rolled out nationwide unless it can be stopped. We ask the Government to reconsider this ill-conceived slaughter of yet another protected species and demand that they revoke the licences. There are better ways to protect farm livestock than to embark on the destruction of an endangered and much loved bird. www.jasonendfield.com
Ban Nuts and Nut Products from Airlines
Aim: to ban the sale and use of nut and nut products (such as nut cooking oil) in food offerings, and ALSO to give air stewards the right, under law or policy, to inform a passenger with externally purchased nuts that they are not at liberty to consume them during flight. My Cousin, and Julie's niece and Goddaughter, Amy May Shead is a 30-year-old woman who was left severely brain injured after a catastrophic allergic reaction to one mouthful of food containing nut-products, while on holiday in Budapest. While this tragic incident, which has left Amy unable to walk, talk or see, did not occur on an airline, The Amy May Trust, the organisation raising vital funds for Amy's continual medical care and rehabilitation are raising awareness of the dangers of nuts and nut products to other nut allergy sufferers. Airlines are a confined space and a unique environment compared to all other modes of transportation. Unlike other forms of both private and public transport, or open spaces (all of which can be fatal to a nut allergy sufferer), an airline is an airtight tube within which the ventilation system can cause serious consequences to passengers who may be affected by contaminated air. Equally, if a reaction takes place onboard, the patient will require urgent and time-sensitive medical care, often within moments of the reaction taking place, even with personal medication such as an EpiPen, reaching a hospital within the required time is an unfeasible solution when thousands of feet in the air. Off the back of UK national exposure of Amy's tragic story, The Amy May Trust are petitioning to remove all nuts from airlines. While we understand the small comforts of travelling, such as a snack with your first-holiday drink onboard, we also realise the seriousness of many allergies, of which nuts pose a life or death danger, which is why we believe nuts and nut products should be banned from this unique mode of transport. We also appreciate the vast majority of airlines handle a passenger with a nut allergy extremely well, yet a blanket ban and the right for an air steward to inform a passenger with externally purchased nuts that they are not at liberty to eat them while onboard, will dramatically reduce the risk to both the sufferer and the airline. There are many alternative snacks to offer onboard a flight, but a nut allergy sufferer has only one life.
SAVE THE BEES: ban the use of chemical pesticides in public spaces & plant flowers instead
ProblemBee decline since the late 1990s has become a serious problem. Beekeepers around the world have noticed unusually high rates of decline in honeybee colonies, and unfortunately, this is not all about a decline in the availability of honey. Bees are key to food production, as they are vital in the pollination of crops. One-third of the food we eat depends on pollinating insects, and in Europe alone, 4,000 vegetables depend on insect pollination. If this trend of decline continues, crop yield, which already faces a multitude of challenges, will diminish further. The UK is falling behind in the fight to protect these indispensable species. Since 2010 there has been a 45% loss of commercial honeybees in the UK. The UK National Action Plan for the Sustainable Use of Pesticides, although conscious of risks to water quality and plant protection, ironically fails to acknowledge the need to protect insects, who are vital in the protection of plant species. This plan fails to prevent pesticides from being used in public spaces. When an area is sprayed with more pesticides, agricultural structural elements are lost, and insects vanish. As such, more needs to be done to prevent this and protect the invaluable species of bees before it's too late.SolutionCities like Amsterdam might have found the solution. Like the rest of the world, it's bee population has been in steep decline. However, since 2000, whilst this trend has continued for the rest of the world, Amsterdam's bee population has risen by 40%. Planting native flowers in public spaces (such as in parks and on street corners), installing insect homes across the city, and introducing a ban on the use of chemical pesticides in public spaces has enabled Amsterdam's bee population to bloom.The UK National Action Plan for the Sustainable Use of Pesticides does not include such a prohibition on the use of chemical pesticides, only: "in certain areas (including public spaces and conservation areas) that the amount used and frequency of use is as low as reasonably practicable."If we are truly committed to saving bees, the species which uphold so much of our wildlife and food production, we need to take this further and ban the use of chemical pesticides in public spaces and provide bees with an environment in which they can thrive. Our lives depend on theirs.
Dignity for those in care! Introduce minimum staff to patient ratios in care homes!
I got into elderly care a few years ago, after realising I wanted to do a job were I gave back to others. The older generation have given so much throughout their lives, and it only seems right they should be cared for and respected in return. As soon as I started working as a dementia nurse I knew this was my calling. But almost just as quickly I discovered flaws in the system that stop me and the hard-working people I work with from providing adequate care. The biggest problem is understaffing. Far too often staff like myself are left responsible for ten or sometimes twenty vulnerable residents living with disabilities or dementia. There are times I have had to cope, alone, with one person who needs help eating, another who has soiled themselves, and another who has hallucinated and walked off without their walking aid - and no one there to help me. I have seen injuries happen that could so easily have been avoided if only there had been an appropriate number of staff. And I am not alone, in the UK this is a situation care workers are confronted with on a daily basis up and down the country. This care shortage is happening because many care homes have been privatised and there are no laws in the UK to stop these corporations from decreasing the number of carers looking after people to help cut costs and maximise profits. In the U.S, Canada and across most of Europe they have laws that enforce a minimum staff to resident ratio. I don’t understand why we don’t. That is why I am proposing that a minimum ratio of 1:5 (the legal ratio in the US and several other countries) be put in place by law to prevent the negative effects of understaffing. People are more than tasks, and every person requiring care deserves to have their needs met and dignity preserved. Please sign to let the UK government know that the care system NEEDS this in place and to let the care organisations who are guilty of this deliberate understaffing know that it is NOT ACCEPTABLE. Thank you for your time. *I am remaining anonymous to protect myself at work
Make animal cruelty illegal in China.
China is one of if not the worst country when it comes to animal cruelty, each year thousands of animals are brutally killed and in front of each other. Did you know regularly in China dogs are stuffed into small cages before being hanged up by their paws and skinned alive, this happens in front of other dogs and those dogs see what's going to happen to them and they start barking and wailing in fear and for what so some rich people can wear fur clothing? This has to stop every animal can feel pain people need to stop thinking that because they can't speak they can't feel either and that means we control them but we don't! Animals were here first this is their world not ours we need to respect them! In the photo attached to this petition you can see a dog very much still alive having a leg sawn off and there's more to come for that terrified dog and many other animals. Pets are actually stolen off of the street, taken from their loving homes and killed in the most painful ways possible. I am absolutely disgraced to be human if that's what other humans will do for no good reason. Some of us clearly have no humanity in us if we can do this to poor defenceless animals or just sit back and pretend it's not happening because it is happening... right now! So please be the right kind of human and have humanity, sign the petition do these animals good and pass it on so we have a greater chance of stopping this. Please help them, because they need you to care.
Make Pet Theft a Specific Crime in UK Law
In the eyes of the law, stealing a beloved family dog is seen as the same as stealing a phone or bike. The law should reflect the impact this crime has on the victims - both the families and the pets themselves. Dogs are sentient beings, not inanimate objects - that’s why I’m calling for pet theft to be a specific criminal offence. Some police forces are recording dog thefts as a petty crime, there is nothing petty in the theft of a much-loved pet. Pet theft rips the heart out of families and wrecks lives. I’m a dog behaviourist and my work has involved helping people find their stolen dogs. I’ve seen first hand how absolutely heartbreaking it is for families when a dog is stolen - and how devastating it is for the animal too. I believe that so-called dognapping has almost the same effect on the family as kidnapping, as pets are seen as family members. It is time the law reflected this in the sentencing of offenders who do not care about the distress and anxiety their actions cause. Dog theft has risen dramatically over the last 5 years. Making pet theft a specific crime will make it possible for us to crack down on these heartless crooks. Please sign my petition to help stop this heartbreaking offence. Stan Rawlinson, Dog Behaviourist.
Re-open empty Army Barracks for Homeless Ex Serviceman
Please everyone sign this. There are ex servicemen on our streets. The Army Barracks are sitting empty not being used! If they open them, they will have a roof over there head somewhere safe to sleep, they can maintain the up keep and anyone suffering with stress disorder can help eachother. No one who served for our country deserves to be failed by the system
Stop the James Bulger Movie from being shown and taken off the Oscars short list.
This petition is to stop James Bulger movie about his murders from being shown and the Oscar nomination taken away. It is a heartless thing to do, there was no discussion to James family about this movie being made and given the ok to go ahead. If any movie is being made that involves real life stories should always check with the victims families before they start filming and should be law. Victims and their families must come first.