No access to new NAC website

With respect to the new NAC website in support of embryonic stem cell research and therapeutic cloning (see blog of 19 January “NAC website launched”), I was hoping to upload more New York State documents today, minus a “Take action” on payment for egg donation which the ethics committee of the Empire State Stem Cell Board is currently discussing. Alas, after spending an hour putting the finishing touches to a new banner, I found out that I couldn’t access the site at http://network.obxhost.net/index.html from our local council’s Idea Store Whitechapel. In fact, I can’t even access the web host OBXHost.net to upload the work.



According to their website, OBXHost.net is “a leading Free Web Site Hosting Provider” whose “service is highly reliable”. They add that they only use “quality high end servers that are constantly monitored 24 hours a day to ensure your site is always online”. I find it a bit difficult to believe that OBXHost.net has been down for over five hours now.

Perhaps I am just unlucky with the websites I build. On 8 March 2008, the original NAC website was suspended due to what turned out to be spam as reported via SpamCop on 6 March (see blog of 14 March “SpamCop reports Declan as a spammer”); only the day before SpamCop’s report to our web host branding us as spammers, the Home Office emailed Declan on behalf of Home Secretary Jacqueline Smith to confirm that no warrant to intercept his communications had been issued - since 22 October 2007, I have been contacting scientists and academics to invite them to sign Declan’s petition to the UN on therapeutic cloning; to date this petition has been signed by 588 scientists and academics, who - despite excessive spamming (see, for example, blog of 5 December “On red alert”) - include recognised authorities from the world’s leading universities and research institutes, as well as 24 Nobel Laureates.

This is the new NAC banner:



With no access to the new NAC website to upload more NYS documents, tomorrow I will turn to a “Take action” in respect of payment for egg donation which will make the case that donors should not be paid for their eggs, but rather they should be compensated for the burdens of egg retrieval (reference: Steinbock B. Payment for egg donation and surrogacy. Mt Sinai J Med 2004;71:255-265). This take action - for the NYS subsection entitled “Empire State Stem Cell Board” - will be uploaded here as some previous NYS documents have been.

Violence and economic strangulation

For two years we survived on the streets of London by selling The Big Issue, a magazine sold by homeless people on registered pitches throughout the UK. As I wrote in the blog of 17 November, our Big Issue pitches have been terminated (see blog of 11 November “Letter of complaint to the chair of The Big Issue Foundation Charity”). Although we can still sell the magazine on the pitches we had for two years, we have no priority whatsoever: we have to leave if the vendors to whom the pitches have been allocated come along, and not stand in on the pitches at all if a vendor is already there – the former was experienced by Declan this evening (a first in three weeks). The fact that we don’t have pitches any more is particularly serious for me, because I am facing possible prosecution for begging.

With respect to our campaign in support of embryonic stem cell research and therapeutic cloning, I announced in Monday’s blog that the website is launched at http://network.obxhost.net/index.html - the same morning Declan was virtually attacked by a rough sleeper outside the Catholic Sisters of Mercy Dellow Centre (see blog of 6 November 2008 “Letter to Cardinal Cormac Murphy-O'Connor”; Declan has written on several occasions to Cardinal Murphy-O'Connor, the head of the Catholic Church in England and Wales, in his capacity as Archbishop of the Diocese of Westminster, to which the Dellow Centre belongs). I am hoping to have finished uploading New York State within a few days, including a “Take action” in respect of payment for egg donation which the ethics committee of the Empire State Stem Cell Board is currently discussing. The Take action will make the case that donors should not be paid for their eggs, but rather they should be compensated for the burdens of egg retrieval (reference: Steinbock B. Payment for egg donation and surrogacy. Mt Sinai J Med 2004;71:255-265).

New York State - Advocacy efforts

For two years we survived on the streets of London by selling The Big Issue, a magazine sold by homeless people on registered pitches throughout the UK. As I wrote in the blog of 17 November, our Big Issue pitches have been terminated (see blog of 11 November “Letter of complaint to the chair of The Big Issue Foundation Charity”); and although we can still sell the magazine on the pitches we had for two years, we have no priority whatsoever: we have to leave if the vendors to whom the pitches have been allocated come along, and not stand in on the pitches at all if a vendor is already there – the former was experienced by Declan this evening (a first in over two years). The fact that we don’t have pitches any more is particularly serious for me, because I am facing possible prosecution for begging.

In the previous blog “New York State home page” in respect of our website in support of embryonic stem cell research and therapeutic cloning, I presented, as well as the content of the New York State home page, the navigation menu of New York State under Law and Policy in the USA, which includes Advocacy efforts, a snag of which is presented below in a page from the Greenpeace International website. As soon as I have the few New York State snags done, I will quickly build a website loosely based on Greenpeace International and Greenpeace UK which I will then upload to a free hosting service. This snag cannot be read so below it I have transcribed the content. (The blog of 18 November, “Our sleeping pitch is soaked”, includes a snag of a page from the NAC website suspended on 8 March.)



The caption of the picture reads: University of Rochester School of Medicine and Dentistry. The University of Rochester played major roles in the events leading up to the 2007 stem cell research legislation, both in advocacy and in crafting the provisions and scientific language contained in the bill.

The navigation menu of Advocacy Efforts: NYAMR Member Organisations; University of Rochester White Paper.

And the main text:

Advocacy efforts

In the spring of 2007, the New York State Legislature committed $600 million over 11 years to be spent on stem cell research, an initiative that could potentially become the greatest scientific undertaking in the history of New York State. This initiative, administered by the Department of Health through the New York State Stem Cell Science (NYSTEM) program under the direction of the Empire State Stem Cell Board, could not have occurred without the support of the medical, scientific, voluntary health and patient advocacy communities who urged the state to embrace this promising field of science.

New Yorkers for the Advancement of Medical Research (NYAMR)

In August 2007, Dr Maria Mitchell, President of the Academic Medicine Development Company (AMDeC), a consortium of 30 of New York State’s medical schools, academic health centers and major medical research institutions, announced that AMDeC would become the host organisation for New Yorkers for the Advancement of Medical Research (NYAMR), a statewide coalition of 46 organisations advocating for state funding in support of regenerative medicine, including stem cell research. NYAMR was previously housed at the Parkinson’s Disease Foundation.

NYAMR grew out of AMDeC’s successful 2003 genomics-related conference in Albany, where the late actor and stem cell research advocate Christopher Reeve joined New York State Assembly Speaker Sheldon Silver. Reeve gave an impassioned speech in favour of stem cell research, while Speaker Silver announced passage by the Assembly of legislation expressly endorsing stem cell research. Speaker Silver, a strong proponent of biomedical research in New York, championed the bill which passed with an overwhelming majority in the Assembly, but, failed to get through the Senate.

However, out of the ashes of New York’s stalled effort to pass this bill, arose something promising – NYAMR. What began as a small like minded group including AMDeC, the Parkinson’s Disease Foundation, the Juvenile Diabetes Research Foundation and Hadassah, grew to several dozen diverse research, patient disease, economic development and citizen advocacy organisations.

From its inception, NYAMR took on a leadership role in advising and educating state legislators and policymakers about the importance – from a scientific and economic perspective – of state support for stem cell research. NYAMR consulted directly with Albany lawmakers to help design the Empire State Stem Cell Funding Program.

NYAMR continues to monitor closely the funding program to ensure its effective implementation.

University of Rochester

The University of Rochester played major roles in the events leading up to the 2007 legislation, both in advocacy and in crafting the provisions and scientific language contained in the bill. UR President Joel Seligman spearheaded the advocacy efforts of University Presidents and Chancellors, working with UR scientists and governmental relations staff to write a key White Paper entitled “New York and Stem Cell Research: A Scientific, Therapeutic, Economic, and Policy Analysis”, released on 6 February 2006.

This document, signed by the Presidents and Chancellors of 17 New York State universities and other institutions with substantial biomedical and life sciences research programs, details the competitive research environment that had emerged in the previous several years and its implications for the state’s biomedical research community and economy.

The Rochester White Paper makes the following case in support of NYS funding of stem cell research: Federal funding restrictions on human embryonic stem cell research have prompted several states to establish state-based research funds aimed at capturing the scientific and commercial potential of this new field of medicine. While New York’s research institutions are widely acknowledged to possess the scientific talent that would enable the state to be a major leader internationally in stem cell research, there is significant risk that researchers in New York will be recruited away to institutions in other states where they would have access to more resources to pursue their research. The loss of these scientists will have a significant negative ripple effect on a university’s entire research enterprise as research grants, junior scientists, biotech companies, and venture capital will similarly migrate to those institutions that are perceived to be on the cutting edge of biomedical research. A decline in the fortunes of New York’s biomedical research community in turn would have significant economic consequences for the entire state. New York’s State universities, teaching hospitals, and research laboratories contribute significantly to the state’s economy through employment, through spending and through the development of innovative products and concepts for the biotechnology and pharmaceutical industries.

The Empire State Stem Cell Board Funding Committee held a meeting on 27 June 2008 at the NYS Department of Health offices – State Health Commissioner Richard Daines presided as chairperson. Robin Elliott, NYAMR’s former chairperson, appointed to serve as one of thirteen members on the funding committee, suggested that in assessing the economic and other benefits of the NYSTEM initiative the ESSC Board and staff refer to the Rochester White Paper, according to the minutes of the meeting.

Hosed out of our sleeping pitch

Mike Di Scipio in a billboard he posted in New York City, 2004

As I said in the blog of 4 December “Charis Thompson: Why we should, in fact, pay for egg donation”, last Wednesday we learnt that the place where Declan gets his breakfast every weekday and I get my food for the day, the Catholic Sisters of Mercy Dellow Centre, is closed this week Monday to Wednesday, a first in over two years; and that I am pretty much on red alert: for example, two days after the date on a letter from the European Court of Human Rights advising that Declan’s case would be dealt with “as soon as practicable”, our main bag, containing all our money and documents, was robbed in the centre (see blog of 20 June “Letter from the European Court of Human Rights”). My eyes have been particularly on our sleeping pitch – since 7 September we have been sleeping tucked away, about twenty paces from the side entrance of a building, down some twelve steps; prior to that we slept for almost two years in a porch.

I’m afraid I could hardly be more spot-on: in addition to being told on Wednesday, Thursday and Friday night to stay away until 1.00am due to there being a “function” (we get up at 4.20am M-F; 6.20am on weekends), this morning I was convinced Declan and I were heading for the local City of London police station to seek to make a statement in respect of the hosing of our property by a cleaner at 4.30am this morning. We don’t disturb or obstruct anybody; nevertheless, as soon as we got up two cleaners came out of the building: one threw a bucket of water down the steps, and shortly after, the other, for twenty minutes, hosed around us, spraying both me and our bags in the process (by the time we had packed to leave, the approximately four-inch deep gulley on two sides of us was almost overflowing). In over two years as rough sleepers we have never experienced anything like it; the closest was on 9 June when, under the watchful eye of a City of London police officer who had just threatened us with arrest if we did not “move on”, two cleaners from the City of London’s Cleansing service washed around our groundsheet, water pouring down the two steps of the porch onto the pavement (see blog of 9 June “Letter to the City of London Police Commissioner”).

We find it all a bit odd, especially since communications started out cordial between us and employees: we were visited by an employee within days, and on three occasions within the first two weeks we were given food. Also, according to the website of the company that owns the building, they are well respected and not only fund raise for science education (Declan’s petition to the UN on research cloning of embryos and stem cells has been signed by 587 scientists and academics, including 24 Nobel Laureates), but run a project for the homeless.

However, even if we had gone to the police station, we would still be back in the place tonight: on 10 September, after we bedded down elsewhere, I was arrested for refusing to move on as a result of having nowhere else to sleep (see blog of 11 September “I am arrested for breach of the peace”). And I don’t have to be reminded of the eventful two years in the porch, despite it being located in London’s financial district (I slept on the outside, Declan on the inside with our well-tied bags): for example, within two weeks somebody sat on the right hand side of my face (see blog of 18 November 2006); I was dragged out of the porch by the ankles while I was in my sleeping bag, then a few hours later I was kicked in the back (see blog of 5 May 2007); a guy repeatedly kicked me in the chest and shoulders as his mates stood by (see blog of 22 September 2007); and I was urinated on (see blog of 2 August). Declan was also jumped on, feet first, as he slept in the porch, and was especially fortunate not to have bones broken (see blog of 14 June). Since we have no option but to be in the street (see blog of 21 October “European Court of Human Rights declares application inadmissible”), we prefer to be at the back of a building, off the streets; though it seems not everyone shares this preference with us.

I mentioned in the previous blog that I believe there is a link between the little sleep we have been getting since Wednesday (and now the hosing) and the work I started early last week on the compensation of egg donors to boost the supply of human eggs needed for therapeutic cloning, also known as somatic cell nuclear transfer (SCNT). I expect the “functions”, and perhaps now also the hosing, will likely become a nightly occurrence, which is why in the previous blog I said that I am cutting my losses and concentrating exclusively on SCNT: I am putting together all the content that will be on my website in support of nuclear transfer – the blog of 1 November “Can a cell have a soul?” describes what this website will contain, including with respect to human embryonic stem (hES) cell research.

For two years we survived on the streets of London by selling The Big Issue, a magazine sold by homeless people on registered pitches throughout the UK. As I wrote in the blog of 17 November, our Big Issue pitches have been terminated (see blog of 11 November “Letter of complaint to the chair of The Big Issue Foundation Charity”); and although we can still sell the magazine on the pitches we had for two years, we have no priority whatsoever: we have to leave if the vendors to whom the pitches have been allocated come along, and not stand in on the pitches at all if a vendor is already there – the latter was experienced by Declan this evening (a first in over two weeks). The fact that we don’t have pitches any more is particularly serious for me, because I am facing possible prosecution for begging.

On the SCNT front, I was particularly interested to discover that the Empire State Stem Cell Board Ethics Committee (New York) is currently discussing the financial compensation of women who donate their eggs for research - the Committee makes recommendations regarding scientific, medical and ethical standards to the ESSC Board Funding Committee which oversees and administers $600 million in funding to promote stem cell research and development in New York State; $100 million was earmarked for FY 2007-2008 and $500 million was earmarked at $50 million per year for ten years beginning in FY 2008-2009. The minutes of the Committee’s meeting on 4 September reveals that Franciscan Friar Daniel Sulmasy, Professor of Medicine and Director of the Bioethics Institute of New York Medical College, “questioned whether New York State should go out on a limb and be the first to explicitly allow compensation of egg donors for research”. He also suggested that the Committee “should return to its discussions about the embryo and the unresolved issue of what the Committee means by ‘respect for the embryo’.” The Committee’s upcoming meeting is scheduled for 26 January.