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Petition Tag - research
The historical inequalities between women and men in research participation and in science knowledge create barriers to achieving the full socio-economic benefits of science-led innovation. With women in a minority and science with more evidence for men than for women, outcomes and opportunities are biased to advantage the needs of men and overlook the needs of women.
But now, extensive evidence shows that gender bias in science knowledge making can negatively impact on the quality of scientific research for both women and men. Whilst we continue building systematic understanding of the underlying causes, we have enough solid knowledge to generate the benefits of gender sensitive and responsive research.
The scientists, gender scholars and policy makers attending the Gender Summit 6 - Asia Pacific 2015 (GS6 – AP) discussed the full complexity and diversity of gender issues in research and innovation in the region. These discussions identified numerous scientific and socio-economic benefits of adopting gendered approaches to research and innovation.
Science and policy leaders in Europe have already taken such actions as a strategy for the EU Horizon 2020 programme, as well as at national level.
We call on science and policy leaders in Asia Pacific to promote gender aware and sensitive research and innovation to improve the quality of science and enhance socio-economic development in the region.
Vaccines have a good purpose and function, and eliminating vaccine preventable disease is a public health issue.
Considering the effects of vaccine injury and side effects is an equally important public health issue.
This is documented with research and the billions paid out via the Vaccine Injury Compensation Plan (and that is only to those who have actually filed a claim).
NYC is creating space for 70,000 new pre-K students in 2014-2015. As early childhood educators, we know that it is critical that these programs be of the highest quality.
Research and expertise in early childhood education make it clear that high quality early childhood programming means: small class size, warm teacher-child relationships, activities that promote interaction between peers and teachers, class time devoted to open-ended play and exploration and opportunities for children to discover their core capactities and themselves as learners.
Many bright minds pursuing PhDs in the country, struggle to meet two ends.
In this context, I request the Prime Minister to kindly recommend MHRD to increase the scholarship amount of PhD students, which would give a little relief to the young minds to do science peacefully.
"My name is Erin Griffin, I am 13 years old and I have brain cancer... All childhood cancers need a cure and it isn't fair that children are dying because there's no treatments for them. Children have their whole lives ahead of them. Kids are our future, but lots of kids with cancer don't get a chance to grow up because there is not enough awareness and not enough funding or treatments. There are children dying every day from cancer. This is not right and this needs to change. There needs to be more awareness and I'm going to help make this happen." (Erin Griffin, CureFest, 1st September, 2013)
Did you know that childhood cancer kills more children than any other disease in Australia? Yet the Australian National Cancer budget spends less than 4% of its annual budget on pediatric cancer research.
We believe that our elected leaders have an obligation to protect our most vulnerable citizens by making childhood cancer research a national priority.
Nobody would have thought that in less than two years of setting up of the first Indian Sign Language Research & Training Centre (ISLRTC) for the Hearing-Impaired, plans would be afoot to shut it down. But that is what seems to be happening at the Indira Gandhi National Open University (IGNOU) campus here.
Vice-Chancellor M. Aslam has publicly announced that t there was no point in continuing with the Bachelor of Arts in Applied Sign Language Studies (BAASLS) program.
Federal funding with taxpayer dollars finances and encourages the torture and murder of thousands of animals in U.S. university laboratories every year. Experiments are conducted on animals including dogs, cats, rabbits, mice and rats that produce little to no viable results.
These animals are forced into horrific and torturous experiments for such things as the testing of the effects of smoking (which has already been established), for testing the efficacy of household cleaning products and for the cosmetics industry. Those researchers that claim they use these animals for medical research have thus far produced no viable results.
There are currently-available alternatives to all research programs including computer and virtual reality programs that are just as effective and cost effective that would save taxpayer dollars and would not require the torture and murder of live animals. Animals are not ours to exploit for convenience. They are living, breathing, feeling beings just like us. And if it's true that they are just like us, their welfare should be equated with ours.
Wasting taxpayer money to fund universities and aggrandize researchers is an affront to American taxpayers and portrays our country as an inhumane nation. There are more humane alternatives and we, the citizens of the United States, want these brutal, unnecessary research programs defunded immediately.
What closure would mean for Whithorn and the local area:-
Loss of 7 jobs.
Loss of spend in the local shops – the Whithorn Trust spends in the region of £2,500 in Whithorn shops annually with a further £2,500 at least spent in Dumfries and Galloway.
Loss of the only visitor facility in the Machars which advertises across the region and beyond. Consequential loss of visitors to the area.
Loss of a major visitor attraction open daily to visitors visiting the Machars
Loss of the museum which displays objects from Whithorn in Whithorn – these will be returned to Council and placed in store or returned to Edinburgh. Although the excavations were done by the Whithorn Trust the Council claimed the objects and these are loaned back to be displayed in Whithorn itself to bring visitors to the site.
Loss of 7,500 visitors per year and their associated spend in Whithorn as part of their visit.
Loss of over £500,000 to the local economy.
Loss of a museum which demonstrates the nation’s identity and diversity and display of a collection of international importance.
Loss of focus for local events and projects – Junior Tour Guides, Whithorn Events Group, art exhibitions.
Loss of meeting place for U3A, Whithorn Art and Crafts Trail, Whithorn and District Business Association.
Loss of visitor information point and café open all week.
Loss of funding raised for special projects – in 2011/12 the Trust raised £75,000 for the Machars Archaeology Project.
Many of you may have seen the 'Stand up to Cancer' campaign which was aired on Channel 4 in October 2012, which asked for public donations in order to fund Cancer Research UK. Cancer Research UK are the world's leading charity dedicated to beating cancer through scientific research.
According to Cancer Research UK, they are on the cusp of many cancer treatments, however there is a gap between the discoveries coming out of the lab and the number that they can afford to take forward to develop as new tests and treatments.
To date, the 'Stand up to Cancer' National campaign has raised over £8 million pounds which is fantastic. However, we know it takes about £500 million to to take a drug all the way from the lab to the market; this figure takes into account all of the treatments that didn't make it.
Therefore, I personally feel that a faster way to close this monetary gap between scientific discoveries and bringing those treatment to the patients, was if the world's most profitable corporations all collaborated together and donated a small percentage of their pre-tax earnings to Cancer Research UK.
The more ideas that they can test, the more likely they are to get new treatments to patients faster. And as I say, there are many treatments that are on the cusp of being brought to market.
This may appear to be a large 'ask' of our profitable organisations, however sometimes the simplest ideas are the most effective if you have the collective power of many people.
The Imperial College Management Board has informed us that the activities carried out by the Translation Studies Unit (TSU) are not considered core to the College strategy and that, if possible, the Unit should be transferred to another institution.
If this solution proves not to be feasible, consideration will be given to closing the unit by the end of September 2013.
Support E-BCR, Business, Consulting, Research Services, Online Shopping, Investments: www.e-bcr.com
by putting a link to your website. Increase your website traffic. Internet users visit www.e-bcr.com, you will enjoy it.
Please tell the National Health and Medical Research Council (NHMRC) to stop funding millions of taxpayer's money into animal testing.
Over 10 million animals a year are used as models in medical research, most funded by taxpayer's money.
These animals are not protected by the Animal Welfare Act and are subjected to torturous experimentation which are often inconclusive and unscientific.
Putting aside the cruelty, animals and humans differ genetically, anatomically and metabolically therefore animals are inappropriate models for medical research. 9 out of 10 drugs that work successfully on animals failed on humans.
Please urge NHMRC to stop funding this cruel, expensive and inconclusive practice and invest in alternative methods such as computer modelling, Corrositex, improved statistical design, the Murine Local Lymph Node Assay (LLNA), etc.
(Potted History & Video)
A HISTORY ERASED
Irvine New Town and IDC
Between 1966 and 1985, the magnificent medieval history of Irvine was inexplicably erased upon the introduction and implementation of Scotland's New Town vision - a plan that saw the evocative title "Ancient Royal Burgh of Irvine" transformed into the much-maligned "Irvine New Town".
We now know that the former council-endorsed version of Irvine’s history has failed to properly communicate, incorporate or connect with numerous game-changing royal sources from the years 1128 to 1406. The result is tragic and heartbreaking; modern Irvinites have been told that Irvine launched itself as a settlement in the late 14th and early 15th centuries.
SCOTLAND'S LOST MEDIEVAL CAPITAL
David I, John Balliol, Robert II & Robert III
Recent research by Morton Research Labs (2003-2009) has proven that Irvine began operating as an administrative centre for David I in the early 12th century, when he issued at least two charters (the primary hallmark of all medieval Scottish capitals) from his palace somewhere in the town (c.1128 & c.1138). Numerous subsequent charters were signed by the overlord of Irvine, the High Constable of Scotland, who had established his national HQ, or "military caput" (Military capital) somewhere in the town around the same time.
John Balliol, the legitimate Lord of Cunninghame, was feudal overlord of Irvine before and during his short reign as King of Scots in 1292-1296.
The first Stewarts, Kings Robert II and Robert III – descendants of the Dundonald-based High Stewards of Scotland - both issued numerous charters from Irvine between the 14th and 15th centuries.
A CENTRE OF GENIUS
Literature, Invention & Praise
In common with London and Edinburgh, and all other capital cities, Irvine in later years would help shape the minds and works of some of the world’s greatest historical characters; James Boswell was “quite comfortable” there. Daniel Defoe thought it one of the finest towns in one of the finest counties in the British Isles and was sore to leave it.
Like St. Andrews, Stirling, Edinburgh, Scone, and Glasgow – our more famous high status royal centres - Irvine culturally and economically outperformed almost every other settlement in Scotland for almost a thousand years.
The first Scots translation of the Bible was made in the Irvine valley. One of the oldest Syrian Gospels was discovered by twin sisters from Irvine. William Wallace is alleged to have gone fishing on the River Irvine and may even have been born in or around the town. Edgar Allan Poe may have attended school in Irvine’s kirkgate. The current deputy First Minister of Scotland, as well as the previous First Minister, were both born in Irvine.
A hotspot for local inventors, Irvine gave us the Pneumatic Tyre, water heated beds, a screw propeller and helped develop and enhance one of the first passenger railways in the world. A high speed suspension railway was invented and tested in Irvine shortly after the advent of train travel. A snow plough was devised. A tidal gauge, invented by a local man, was constructed at the coast. We could go on...
A CRUSHING ARCHITECTURAL REVIEW
Four years ago architecture critic Tom Dyckhoff (The Guardian) called Irvine a “droopy port” that hadn’t “seen its heyday in a century or two”. He reckoned the main shopping precinct was “one of the worst in Scotland” and observed that while “dour estates” like Broomlands, Bourtreehill and Dreghorn offered genuine “new-town bargains”, they should still be considered “bleak” by today’s standards. Published nationwide and republished worldwide on the net, the added testimony of one unimpressed resident (“much of the town is the pits”) no doubt added sea-salt to the wound. After all, this was part of Dyckhoff’s “where no one goes” series.
THE "OFFICIAL" HISTORY OF MEDIEVAL IRVINE
The previous medieval history formally adopted by North Ayrshire Council is still promoted by the Irvine Burns Club. It states that medieval Irvine was "created a Royal Burgh in 1372 by Robert II" and "was a major West of Scotland seaport before the dredging of the Clyde".
That's all they have to say about medieval Irvine. The 12th to 13th centuries have been completely cut out. No Wallace. No Bruce. No Balliol. No David I. No Robert II. No Robert III. No High Constables. No High Stewards.
We need to replace - as soon as possible - all descriptions of medieval Irvine that begin (and end) with the misleading supposition that Robert II founded a Royal Burgh there in the late 14th century.
A NEW FUTURE, A NEW IRVINE
We want the Ancient Royal Burgh of Irvine to be recognised for its contribution to Scottish history as a centre of learning, technology, agriculture and medieval administration.
We want you to want it too.
To all those brilliant people who choose to sign this:
All signatures will appear on the "I Saved Irvine" page on our website.
See links for more information:
Royal Irvine: http://mr-labs.wix.com/royalirvine
Visit us on Twitter: https://twitter.co/#!/MortonResearch
Visit our Facebook: http://www.facebook.com/RoyalBurghOfIrvine
No one could accept that the University of Luxembourg would apply such a decision to a high-level academic, researcher, teacher and advisor like Dr. Ziegler after she has succeeded in designing, developing and directing an outstanding upper-level Master program.
The achievements of the program as well as its originality have contributed to the distinction and credit of the University of Luxembourg. Furthermore the projects within Dr. Ziegler’s research group have produced results, which are recognized by a large number of international experts and which have strong impacts on Luxembourg as a multilingual community.
Rare disorders affect about 1 in 12 persons, or 2.7 million Canadians. These people are Canada’s most vulnerable citizens and need your support. We are requesting that the political parties of Canada answer the following three questions on rare diseases in Canada.
Your name will be sent along with this petition to the political parties of Canada.
Badgers are very cute, innocent animals. They have hardly ever attacked anyone. Despite what people may think, they are not all vegetarian, they sometimes eat mice or even baby rabbits.
Despite their innocence, the UK government and DEFRA are planning to cull them. Although the Welsh badger cull has been stopped, the English one may still take place. It is to do with stopping the spread of TB onto cattle, but this could quite easily be done be researching for a new vaccine against TB for the cattle.
One of the methods used to kill badgers would be gassing them in their setts, and this is very, very cruel. It doesn't even mean aninstant death, and even if it did the cull still wouldn't be justified. Rather, it means a very painful death for the badgers.
Following the deaths Charlie & Kian Jones from a congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome (HLHS), the Charlie Jones Foundation was established.
They endeavour to raise awareness into HLHS and to also fundraise for our local PICU.
CHD's a the number one killer in babies and many often go undetected until the child dies and a post mortem is carried out. There is hardly any research into heart defects in this country yet the Government plough money into cancer research when statistics show that the highest number of infant and child deaths is due to a heart defect and not cancer.
March 8, 2005, will go down in history. It is the date on which the plenary session of the United Nations General Assembly ratified solemnly the anti-cloning Declaration recommended by its legal committee, with an even stronger vote of nearly 3-1 called on member states to ban all human cloning.
Today, July 21,2010, we have no legal limits to preimplantation genetic diagnosis, and this could easily allow someone to clone.
Since its inception in 2005, the Centre for Ethics has established itself, both domestically and internationally, as a unique and vibrant hub of interdisciplinary and collaborative research in the field of ethics. Widely acclaimed as one of the University’s leading research units, the Centre has been described as one of the top three institutes of its kind in the world, standing firmly alongside its counterparts at Harvard and Princeton.
In the last week of June 2010, the Faculty of Arts and Sciences revealed its startling decision to dismantle the Centre for Ethics at the University of Toronto. In its new academic plan, the Faculty has declared its intent to redeploy the $308,000 annual budget of the Centre to “ethics-based educational initiatives across the Faculty.” Provost Cheryl Misak would later attribute this decision to “financial pressures,” asserting that “the University of Toronto’s commitment to the finest research in and teaching of the subject of ethics is unwavering, despite this recent shift in how the Faculty of Arts and Sciences goes about it.” It is doubly unfortunate then to have this particular decision included in the broader financial pressures that face the University. Not only is this decision unrelated to the wider determination to rein in spending, it will potentially harm the very students it purports to serve.
It is important to note that the University has not chosen to eliminate the funds formerly allocated to the Centre for Ethics, but rather to divert them to ethics-related courses run out of existing departments. This seems to suggest that the decision is less about saving money than it is a reflection of shifting priorities and commitments. Without a doubt, expanding the Faculty’s existing course offerings in ethics is an important and laudable aim, but doing so at the expense of the Centre for Ethics is both wrongheaded and shortsighted. Teaching and research are dual pillars of the university; excellence in one reinforces excellence in the other. The teaching of ethics in diverse fields becomes wooden and forced when not connected to ethics research projects. Dismantling the Centre for Ethics would not further the University’s aims to provide cutting edge teaching in ethics, but would arguably reduce both its teaching capacities and its international profile.
One of the Centre’s greatest achievements has been in building bridges among scholars and students from a wide range of disciplines and departments across the Faculty of Arts and Science and beyond. Within the traditionally decentralized institutional framework of the University of Toronto, the Centre for Ethics has been an effective counteragent to departmental parochialism, creating a community of researchers with shared interests, despite their often very different backgrounds, methodologies, and approaches to problems in ethics. By offering an institutional home for these scholars, the Centre has helped build up inter-departmental relationships and has generated unique opportunities for collaboration and insight—learning that is then transported back into the researchers’ departments of origin and into the classroom.
Through its many seminars and conferences, the Centre has explored such pressing issues as climate change, cultural difference and “reasonable accommodation,” Aboriginal politics, business ethics, electoral reform, ethics and democracy, secularism, civil society, and the ethics of catastrophe, to name but a few. Moreover, the Centre acts as an important bridge between the university and the broader community by fostering a distinctive space for public engagement on questions of ethics. Through its Community Research Partnerships and Public Issues Forums, the Centre engages students, faculty, and the general public in discussion of topics of acute relevance to today’s world. This kind of socially relevant and engaged scholarship is an example to the world and as a world-class research institution that prides itself on its commitment to teaching and research, the University of Toronto should be proud to support it.
The Harper government is moving to eliminate the Canada census long form questionnaire and replace it with a voluntary survey. The long form was sent to 20% of households and is a critical source of information about diversity, employment, income, education and other characteristics of Canadians. It is essential to business, research, planning and good public policies and programs. Stakeholders ranging from the business community, to university researchers to social justice advocates are raising their voices to oppose this move.
Le gouvernement Harper entend supprimer le questionnaire long du prochain recensement et le remplacer par une enquête à participation volontaire. Le questionnaire long est une source d’information inestimable pour les affaires, la recherche et l’évaluation des programmes et des politiques.
We who have Bipolar Disorder suffer sleep deprivation almost nightly. And it often triggers or exacerbates the more obviously dangerous symptoms of the disorder.
For example, anger, impulsiveness, mixed manic episodes, depression, and manic risk-taking; all of which can result in destructive, painful, and even suicidal behavior. Yet, in our treatment, sleep deprivation is poorly addressed and frequently dismissed.
Getting a good night's sleep vastly improves our experience of bipolar and transforms our quality of life. But it rarely happens.
Therefore, we request that NIMH increase its research in this area.
A majority of Americans rely on ratings, user reviews, recommendations and written comments to make smarter decisions.
Often it is a time consuming and frustrating process to read long-form comments to understand the views of others.
Our Company has a patent for a new system to gather online feedback that makes it easier for consumers to contribute feedback and for businesses and consumers to understand that feedback in just a few seconds.
View example feedback about "GLEE".
On behalf of the more than 100,000 women and men in Arizona who are contending with infertility, please help us oppose SB 1306 and SB 1307 because they will make infertility treatment less available and less effective. We urge Arizona residents to turn up the volume to let your Representatives know that you oppose these anti-family bills.
Instead of banning egg donation directly, the bill takes a more indirect route. It imposes unprecedented and unnecessary informed consent requirements. The penalties are severe: if a physician does not follow the new rules to the letter, he could wind up losing his license to practice medicine, being convicted of a Class 1 misdemeanor (the most serious class), and face 6 months in prison.
SB 1306 also casts other common medical practices into question: Will physicians be allowed to freeze and thaw eggs for preservation, a common practice? Can physicians screen for genetic defects? Can new specialists and embryologists be trained? The physicians in the infertility practices believe these practices will no longer be legal. Physicians will no longer treat patients who need egg donation as a means to build their families in Arizona, driving these couples out of state to seek treatment.
The second bill, SB 1307, also contains provisions that threaten infertility patients, mainly through vague terms that make it unclear what treatments doctors can safely perform and which ones could land them in jail. Most flagrantly, this bill could forbid embryo cryopreservation (freezing) – which would dramatically alter how reproductive medicine is practiced and would cause harm and hardship to patients.
The bill makes it criminal to harm an embryo in the course of "nontherapeutic research" -- but leaves it very unclear whether ordinary IVF embryology lab techniques could be classified as such illegal research. The penalty for harming an embryo is steep: a minimum of 6 months in prison, and up to 1.5 years. The point of the legislation – to make it undesirable to practice reproductive medicine in Arizona and to drive the doctors and clinics out.
“The medical community working in this field strongly believes that [SB 1307] would prohibit:
• Practices that allow embryologists to screen embryos for genetic disease. Some genetic conditions can actually be removed from an embryo prior to transfer.
• Practices such as Preimplantation Genetic Diagnosis that select only healthy embryos from genetically challenged couples, avoiding miscarriage and health risks.
• Screening to select only the most viable embryos for transfer allowing doctors to transfer one or two embryos. This reduces the need for multiple embryos that lead to high-order multiples and premature birth."
With a class 6 felony and loss of license to practice, no physician in Arizona would dare take that chance. They would no longer be able to help Arizona couples have families. These unintended consequences will drive businesses out of Arizona, and force couples seeking this treatment to go elsewhere [if they can].
Please sign this petition to let the AZ legislators know you oppose these bills.
The University of Florida touts itself as “a leading research institution,” and states the following on its web site with regards to student research: Graduate education and research go hand-in-hand. The great discoveries of the 21st century will undoubtedly come from the creative efforts of university faculty working closely with bright and motivated graduate students. Graduate students . . . broaden the knowledge base of their disciplines in countless ways.
Recently, the University announced its decision that Mr. Bougher and Mr. Safiullin would not be allowed to use footage gathered on a trip to Haiti after the island was struck by an earthquake on January 12, 2010, despite the fact that Mr. Bougher and Mr. Safiullin were on the island when the earthquake struck, were required to evacuate, and subsequently were unable to gather necessary footage for completion of their project.
The University of Florida, as aforementioned, prides itself on being a premier research institution that has made significant contributions to benefit countless people. Indeed, perhaps no other institution is as uniquely positioned as a university to take advantage of democratic freedoms to enhance the well being of society.
Yet, in the case of Mr. Bougher and Mr. Safiullin, it appears protocol and bureaucratic red tape trump truth and progress. It has been suggested by Provost Joe Glover that Mr. Bougher and Mr. Safiullin should have simply refocused their thesis on the Dominican Republic; not only is this suggestion culturally insensitive in that it suggests two distinct and separate nations, Haiti and the Dominican Republic, are interchangeable, but this statement also belies the University’s supposed belief in the importance and integrity of its graduate students’ research.
While the University’s ban on university-funded travel to Haiti is understandable, Mr. Bougher and Mr. Safiullin returned to Haiti through their own means, assuming all risk, knowing that the risk of traveling to Haiti was equivalent to the risk any United States citizen assumes when traveling out of the country. The students’ use of private funds only underscores their commitment to this project.
During the month of March a survey was conducted at the University of Lethbridge.
What Does the University of Lethbridge Community Think of Sodexo Food?
The objective of this survey was to receive an empirical answer to the question of what the University of Lethbridge (UofL) community think of Sodexo food services on campus. This survey was commissioned by the Service Employee’s International Union (S.E.I.U) after consultation with the University of Lethbridge Students Union (ULSU) and the Lethbridge Public Interest Research Group (LPIRG). If the answer was found to be a negative one then a second action-research projected would attempt to get better food service on campus.
Initially the goal was to collect 400 responses but with the survey approaching 250 a very clear trend had emerged and we decided we had enough data. With 244 surveys returned there was a very high (95.1%) completion rate.
The University of Lethbridge has a population of over 10000 including 8200 undergraduates and the survey has a 95% confidence rating that the results are accurate within 6points.
The clearest message from both the quantitative and qualitative data is that the price of food is too high for the quality received. 70% picked the worst category on the price of food in the quantitative section and in the qualitative section over 150 wrote that the food was too expensive.
Another significant statistical response was overall satisfaction with 48.5% rating it as “poor”. The comments section revealed a significant number are unhappy with the exclusivity contract, the mandatory residence meal plan, greasy food, the lack of healthy food and vegetarian options and choices for those on restricted diets.
Perhaps most significant though was that eight students reported getting food poisoning after eating at Sodexo establishments at the UofL. The results of this survey provide a very clear mandate for changes to food services at the University of Lethbridge.
PETITION FOR THE CONTINUATION OF THE HYPERMOBILITY SYNDROMES (HMS) AND EHLERS-DANLOS SYNDROME (EDS) SERVICES AT CHAPEL ALLERTON (Leeds Teaching Hospitals NHS Trust)
As you are all aware Professor Bird retires after serving the above community of patients at the end of September 2010. Our information indicates that the Leeds Teaching Hospitals NHS Trust do not intend to continue with the service that our community accesses. So with the loss of Prof. Bird and the highly skilled multi-disciplinary team, the existing and 300+ new patients a year, will no longer have access to what is widely recognised as a designated HMS/EDS Clinic.
This will have a devastating effect on the needs of those of us who access the current service in Leeds. Additionally this will lead to an increase in referrals to the other three existing designated HMS/ EDS Clinics in the UK, namely Glasgow, UCH in London and Great Ormond Street Hospital in London. There is no doubt that many of us despite the difficulties in travelling and the extra cost will wish to attend a specialised service in a designated clinic, (especially considering the difficult journey that the majority of us undergo to gain a diagnosis in the first place). It is also apparent that this patient group in fact needs more designated clinics, run by knowledgeable and skilled staff who are up to date with research and who participate in research in attempts to best indentify how to manage and treat what can be a condition which significantly impacts on a patients physical, emotional, financial, family and social lives. It is not in the interests of this patient group to attend ordinary rheumatology appts, so with that in mind we are asking that you all sign this petition for the following reasons;
1.The continuation of a fit for service fit for purpose designated service/clinic for people with HMS/EDS at Leeds Teaching Hospitals NHS Trust.
2.The need for more designated clinics for people with HMS or EDS.
Ehlers-Danlos Syndrome is a group of genetic disorders involving mutations in connective tissue characterized by looseness, instability, and dislocations of the joints, fragile and often hyperelastic skin that bruises, scars, and tears easily, unpredictable arterial and organ rupture causing acute pain, excessive internal bleeding, shock, stroke, and premature death.
There are six major types of Ehlers-Danlos Syndrome that are characterized by distinctive features with life being shortened for individuals with the vascular type due to the possibility of arterial or organ rupture. It is estimated the prevalence of all types of Ehlers-Danlos Syndrome is 1 in 5,000 births worldwide. A network of worldwide support groups have proved of great benefit to individuals with Ehlers-Danlos Syndrome.
Not only do these organizations put people in touch with other individuals managing life with Ehlers-Danlos Syndrome, they are also vital in providing up to date information to the medical profession and public at large. At this stage there is little research being undertaken into Ehlers-Danlos Syndrome, however, there continues to be hope that genetic testing and research will be increased. By encouraging further studies of Ehlers-Danlos Syndrome, new understanding, interventions, and improved treatments can be acquired; current work at the National Institutes of Health and other research institutions can be expanded and increased, generating a growth in the knowledge base and bring hope for a cure.
There is neither routine screening nor a cure for Ehlers-Danlos Syndrome, individuals must seek a diagnosis from a knowledgeable health care provider. Individual symptoms must be evaluated and cared for appropriately; physical and occupational therapy evaluation and intervention may be required to address basic life tasks. Early and accurate diagnosis can provide the opportunity to create life-saving emergency medical plans, ensure proper monitoring, and improve quality of life and support for Ehlers-Danlos Syndrome families before a tragedy occurs.http://www.youtube.com/watch?v=pmrF8Uh-Hyk
I am confident that this could be a revolution for the research and diagnosis of multiple sclerosis ”— Dr. Paolo Zamboni.
If there is a possiblity that MS can be cured this procedure should be looked into. This experimental surgery Dr. Zamboni performed on his wife offers hope that MS, which afflicts 2.5 million people worldwide, can be cured and even largely prevented.
As of today, the government is allowing approximately 90 billion dollars towards research funding for Autism.
There needs to be more money that goes towards this because when everything is accounted for (i.e. research, educational spending, medications, more health insurance coverage, etc.) 90 billion dollars is not near enough.
There are a plethora of mental and physical disorders that effect millions of americans today that could possibly be solved, if we only push research in the direction of one drug; Psilocybin. Forgetting the connotation of drug culture and hippies, Psilocybin has many redeeming qualities, if taken in moderate doses.
Some of the problems that this drug shows promise of curing are: Depression, Multiple Sclerosis, High Blood Pressure, Chronic Migraines, and Obsessive Compulsive Disorder, not to mention the things we may discover on the way. In the '60's, there was research done with Psilocybin, but it was done almost exclusively in high-doses. Low-level therapy with the drug may yield better results than previous research.