Most days, I read the ALSTDI and PatientsLikeMe (PLM) ALS Forums and have done so for several years now. Why do I do this? I'll get to that later.
This morning, I came across a particular thread on PLM-ALS which rather struck me. Contained within it, are a few links including the one where I found, watched and read about Sarah's Story via the Motor Neurone Disease Association website.
After watching it a few times, I placed a link to the video at the Life Scientists room over at FriendFeed and left a comment at PLM to this effect.
Since you need to be a (free) registered member of PLM to access the Forum in question, I can't provide a link to the start of the thread. It reads:-
Hello All
I thought you might like to be aware that this afternoon the MND Association has just launched the first ever UK broadcast advert created to raise awareness of MND.
‘Sarah's Story' is our new awareness-raising campaign of the same name which we will roll out during 2009. The advert is currently being shown at over 50 independent cinemas across England and Wales.
Our hard-hitting advert features Sarah Ezekiel and after whom the campaign has been named, who of course is a regular contributor to patientslikeme. The film is intended to convey the emotional and physical impact of receiving a diagnosis of MND.
The 90-second film tells the story of a young woman who is suddenly ‘attacked' by MND. An actress plays the part of Sarah and as her body deteriorates, the actress's head is superimposed on the body of Sarah.
Its hard-hitting style is likely to shock some audiences. The aim is to stimulate viewers' curiosity to find out how they can help fight back against MND.
Our film has been created at virtually no cost to the MND Association, with extensive free support from within the advertising and film industries.
More information about the Sarah's Story campaign is at: www.sarahsstory.org.uk More information about the campaign including details of when and where the advert will be screened can be found at: www.mndassociation.org/sarahsstory
Very best wishes Sarah
MND Association
Whilst I don't know Sarah Ezekiel per se, I am aware of her, have had contact with her, and am certainly aware of her background and tireless activity as a Patient Advocate in terms of ALS/MND.
(I've blogged about ALS/MND previously here and here).
As a Patient Advocate myself with a genuine interest and now involvement in research in fields of this nature, I was particularly moved by this short film and wanted to help in whatever capacity I could.
PLEASE WATCH THIS IF YOU CAN SPARE TWO MINUTES OF YOUR TIME
"The Making of Sarah's Story" also fully deserves a watch too.
"The MND Association, creatives, actresses and crew discuss the rationale behind the making of this powerful film. ..."
There's this girl wot I've liked for time I've tried to get her attention with a beat and a rhyme She's really fcuking fit and she works down the shoe shop But she's into R'n'B and not hip hop So I'm back once again with a new melody You've got the secrets, I've got the key Let me start the ignition just like R Kelly Come baby, come baby, ride with me
All Come baby, come baby, baby baby come Your love is the bullet, my love is the gun Come baby, come baby, come with me I'll take you on a journey through R and B
Eggsy This is how it started, I remember how you laughed When you met Jason Orange and asked him for an autograph Before that time it was NKOTB To you they were the greatest and the fan club was free You got the photos, the tapes and the t-shirt But when they finally split up I could see how much it hurt Then other boybands came along and stopped the pain But somewhere deep inside amongst the sunshine there was rain
Front to the back to the left to the right Dye my hair, put in the highlight A1, N'Sync and Blue, Westlife, 911, Take That too I'll make a video walkin in the sand Even do a solo deal, money in my hand I'm not silly though cos I've got plans Gonna change direction, gonna be a boyband
All Come baby, come baby, baby baby come Your love is the bullet, my love is the gun Come baby, come baby, come with me I'll take you on a journey through R and B
R and B, get high with me, R and B Oh ohhh ohhh-ohhh
Adam This is the love and your ear's the destination Hip hop, R'n'B, beats across the nation From the girls who love J.Lo, to all the men that wanna be Fat Joe Yeah, it's an R'n'B to hip hop vibe Gonna touch your missus but I'll keep it on the low ride You know I wanna give you devotion Feel my R'nB emotion
Mysti When you're in a boyband, you're gettin lots of money You get to drive fast cars and chill with the honeyz You smoke blow and rap slow Like Enya in Orinocho Flow An ounce of weed, I'm on speed (?) I run much faster, just what I need Bad dance routines guaranteed This chart hit makes your fcukin ears bleed
All Come baby, come baby, baby baby come Your love is the bullet, my love is the gun Come baby, come baby, come with me I'll take you on a journey through R and B
Now buried in this thread of a blog post by Bob O'Hara at Nature Network, is a comment by Bora Zivkovic that very much caught McDawg's eye and IMO, is worthy of a blog post on it's own. As such, follows Bora's comment in verbatim:-
On OA evangelicals:
Every movement for change – if I focus on USA which I know better: Civil Rights, women’s rights, LGBT rights, rights of atheists, liberal politics, journalism, teaching evolution openly in schools, OA publishing, etc. – has to have a two-prong or bi-layered strategy. How?
There are two sets of people working for change. First, you need loud, popular and highly public evangelists. They take a taboo, unspeakable topic and make it a topic of public discourse, something that is OK to discuss in private and in the media for the first time. They challenge the status quo and point out that traditional common sense is wrong on that issue. They move the Overton Window of discourse and reshape the doughnut of what are the acceptable positions in the media. Furthermore, they provide a vision. That vision may seem like Fantasy or Science Fiction to some, but it is a vision nonetheless, making it clear what the final, long-term future goal of the movement is. The statements they make tend to irk the traditional, the entrenched and the timid who usually complain about the “tone” although the tone is perfectly polite and it is the substance that makes them uncomfortable. But the discourse itself is meant to push people outside their comfort zones (of course this is resisted) and to make them think, often for the first time, if their lifelong beliefs and stands are correct.
Without the activity of these highly public evangelists, it is impossible for the second set of people to operate – the gentle folks who work under the radar for the same cause. Those are the people who work one-on-one or in small groups, hand-holding and helping people make small first, timid steps in the right direction. This would be impossible if the evangelists have not set the stage for it – making this discussion possible and making the progressive positions legitimate. It would be impossible if there is no grand vision to point to.
Thus, the OA evangelists are essential – without them librarians, PLoS and others could not have any success in persuading scientists, administrators and US Congress to make the first steps in the right direction, let alone anything bolder than that. The ground-troups do the hard work, but that hard work can bear fruit only if the evangelists have paved the way for it.
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Follows the section from Bob's blog post that Bora was commenting on:-
"The Open Access crowd were there (not just Bora). meeting them reinforced my criticism of their rhetoric. They’re sold on OA and committed to it, but I think that they’re too evangelical, and can’t see that not everybody is so committed. The problems for OA are largely practical – it needs a change in scientific culture, and whilst this is happening, it needs to be encouraged by working with scientists, and understanding their wants and needs. The particular issue I had was over using journals as proxies for quality. Now, I know this isn’t perfect, but we do need something like that (if I have to assess 30 CVs, I don’t have the time to go through and read all the papers, but if i see that one only has papers in small, local, journals, then it says something about the quality of their work). Assigning and calculating credit plays an important part in scientific society (rightly or wrongly!), so advocates of new schemes for publication need to take this into account. This issue is more general – OA needs to be part of the real world, and can’t fall back on special pleading (in fairness, I think PLoS themselves get this, it’s some other advocates who don’t).
I think we need more work to bring more scientists into the online world. This is a perennial problem, of course."
My local ISP exchange (apparently) had some problems over the weekend so I didn't manage to keep up with all the Live Coverage of Science Online '09.
Based upon my experience of attending last year's event virtually, I was slightly dissapointed by the lack of live-streaming this year. Two sessions (last year, ~ 9) were live-streamed, this time thanks to Cameron Neylon, one of which I caught live and the other just there now that I'm back online. (Back to those in a sec.)
There was some additional great instant coverage however via FriendFeed and Twitter (and also Flickr) which totally made up for the limited amount of live video.
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So, here's a few vids linked to the Conference that are already online:-
1) Rough mix of the scio09 Flickr Stream from Friday featuring The Foo Fighters
(Specific embed codes don't appear to work for these as yet - as such, simply click on "On Demand", and then Science Online 09 to access the two videos)
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Keep up with pre/post Conference Blog and Media Coverage here.
Nearly there now and Science Online '09 kicks off darn soon in North Carolina.
++UPDATE++ Bora's blog posts to date about this event are here.
The point of this particular blog post about the Conference is to encourage those interested but unable to attend in person to join the event, err, ONLINE !!!
McDawg was one of the dozen or so who did so last year and can therefore say with authority that whilst this doesn't beat being at any such event in person, it's a most excellent 'second best'.
McDawg's Match Reports from last year are here and here.
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A couple of days ago, Bora left a shout out for assistance in working on a live coverage page on the Conf. wiki. McDawg stepped in and page, Live Coverage is now up. Page is still work in progress but the main thing is, it now exists.
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The only similar conference McDawg has attended in person was Science Blogging 2008: London, last August. From memory, of the 100 or so present, about 8-10 of them live-blogged it, one live-streamed some of the sessions and with permission (thanks again Timo Hannay), one broadcast an MP3 recording of the Final Panel Discussion. Whilst almost all sessions were recorded on digital video by the organisers, at the time of writing, these recordings are not ONLINE. I don't know why this is, this is disappointing, but maybe someone can explain why this has yet to happen. (May I add, this is not a criticism, simply an observation).
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INSTANT REPLAY
Spinning back to events in North Carolina last January, and I might add that after a wee bit of encouragement from those participating virtually, around 9 of the sessions were live-streamed. I don't know if all of these were archived but at least 6 of them can be viewed here thanks to Top Dawg, Wayne-Sutton.com
The interest in these recordings was pretty much as soon as they were uploaded and then for about a week after. It was truly amazing to see the number of views increasing during this period and the tally at the end was in excess of 20,000.
As such, with around 200 participants at the event in person, within a week, virtual participation rose 100 fold.
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This year, I really do hope that there is a dramatic increase in those taking part via the interchoobes.
So, let's build on the past and with even better Live Coverage on the cards this time, be part of Science Online '09 wherever you may be !!
"A small lakeside town in southern New Zealand is not the place you might expect to find one of the planet's great mazes. But Wanaka is home to Stuart Landsborough, maze designer extraordinaire and founder of the town's Puzzling World.
"The maze began life as a standalone attraction in 1973, well before there were any buildings on the site. Thanks to the flexible wooden fence construction, it's gone through various modifications since then. Each change reflected the developing expertise of Landsborough, who put his growing understanding of maze psychology into practice with regular design updates".
A memorable informal meeting from April 2007. Time to blog it. Having transferred from email to word to blog, this is McDawg's longest post to date.
After downloading numerous maps about how to get from a railway station I had not been to before and walk about 1.5 miles to a travelodge that I had not been to before, I thought I was well equipped ahead of this meeting.
After getting off the train in no mans land, I only had one fellow passenger who got off the train with me to point me in the right direction. Getting from A to B on foot was obviously possible (they are both on land as far as I am aware) but would involve traversing motorways and the like. He pointed to a phone box and suggested I call a cab. Excellent idea but us Scottish are notoriously tight fisted. With no taxi numbers on me and none in the phone box (rare to even find a phone box these days) Hhmm.
After a few minutes, my taxi arrived from nowhere. £4 later - I was transported from A to B.
Not anticipating this 30 minute time warp into the future, I scoured the travelodge for Dr Lon Jones and his wife but the results came back negative. I went out for a smoke. 3 puffs in and a gentleman came round the corner. When I spoke with Lon on Tuesday, I told him that I had seen his picture on the web and as such, I would be able to recognise him. This gentleman certainly looked like him from a distance. As he came closer ................ yep, that's him. "Hi Lon" I said as he sailed by me. "Graham?" he said. "Your early" he said looking at his timepiece. I explained (pointing at map at the time) how I had just had a time warp experience in a mystery vehicle called a taxi (a little travelled in but handy vehicle used sparingly by Scotsmen unless blind drunk with no other option to get from B to A).
He left me to finish my cigarette but clearly was unaware that such an experience at a leisurely pace not uncommonly can take a few minutes. As I stubbed out the offending substance, he re-appeared at the door as I entered the Travelodge in no mans land.
He was quizzical about precisely where I had seen his photo. (Ed – from the Xlear website !!)
Dr Lon Jones and Jerry Bozeman
I said that I could not recall where I had seen it. Clearly, he and Mrs Jones had had a conversation vis a vis this issue whilst I had been puffing away outside. He said, "you probably wouldn't have recognised my wife then (as I shook her hand) as she's grown her hair." Indeed this was a factually correct statement to make.
Chapter 1
We proceeded to move to a quiet table away from the burl of the current residents and visitors of the Red Deer Village, Innkeeper’s Lodge, Cumbernauld, Glasgow. Being situated (Ed - A80 actually) just 200m away from the busiest Motorway in Scotland, no deer were visible but they certainly would have been coated in red were they to roam around such a highway.
Mrs Jones was supping on the last drops of a pint of fine ale. After some brief opening pleasantries, Lon asked how I had become involved in CJD. I said that I thought he might ask that and had flung together the previous night some documentation that might be useful during our discussion. I responded with "what sort of music are you guys into?" and proceeded to ruffle through my rucksack for a CD that I thought would be a good closer but turned out to be a great ice-breaker. A copy of "Steck - The Best Bitz" (20 track compilation of work I recorded from 1985 - 2000). Took them both completely by surprise by this. Mrs Jones now known as Jerry mentioned that their hire car has a CD player but they have no CD's. As such, whilst Lon's musical taste in particular not in line with the content of the CD, at the very least, this will get listened to. They’re off to Iona the day after this discussion and after that, Eire and N Ireland.
Chapter 2
In contrast to previous face to face discussions with newish contacts, surprisingly, I took little notes - indeed, less than a page over the space of three hours intense conversation. Jerry I sensed was also a PhD. Indeed, she is a registered and practising psychotherapist. After revealing the nature of my day job, I jokingly suggested that maybe I could refer some of my clients to her. In part this was taken seriously until they both realised the irony of my remark. Both are clear thinkers.
Down to business and more ruffling of aforementioned rucksack or "rucky" as is referred to in this locale.
Now back home, the content of my rucky is much lighter and out of sync (content wise) than when it left these four walls this morning. I would add that I am pleased to still have four walls and a floor after my downstairs neighbour removed a large wall yesterday. Stewards’ enquiry is currently at stage two. Not as bad as initially suspected.
Dipping into sections 3 & 4 of rucky yielded the best documentation. In the meantime, "Pentosan Polysulphate by Linda Curreri" was eloquently passed over to Lon. This was my own personal copy as I was unable to locate the second copy that Linda sent to me which was originally destined for Ian Anderson from Jethro Tull who gets a mention in the foreword.
The "Timeline" of events document from 2000 to the current day was a great guider from time to time during the discussion. To answer Lon's gambit, I briefly mentioned my brother and after a two year time lag, my band split up and it was maybe time (after 20 years in the semi-prof and amateur business) to try something else. I explained how I had been called a week after the band break up to consider being Vice-Chair of a (later to become Charity) CJD Support Group. I went onto explain that at the tender age of 32, to me, it seemed like an interesting but challenging role for me to consider, let alone accept. How right I was!!
Chapter 3
Lon intensely read Linda’s book and recalled that he had first heard from her (from memory) around 1999 – 2000. I remarked that I had not connected with Linda until 2003 but had remained in contact with her on a very regular basis right up to the current day. It became Xlear, sorry, clear that Lon had missed an opportunity to drop by and meet Linda face to face when he and Jerry were in New Zealand two years ago. They do however plan to return and most certainly will wish to meet this courageous and intensely interesting individual next time around. Not that it seemed to be required but the writer encouraged such an operchancity.
With Lon still engrossed in Linda’s book, I spoke at some length with Jerry about music and Church organs none the less. Personally, I had only played one about twice back in the Eighties when our, at the time Rev’d, was not in the building.
After a brief (but it ties in) relapse into the beginnings of my musical training at the piano and more importantly, keyboards etc etc, we went back to business and Jerry picked up again, her copy of today’s “The Independent” courtesy of the travelodge. Later on, I myself picked a free copy of this 70p ‘newspaper’, found little news but pages upon pages of advertisements. (These days, If I want news, I usually use the Internet.)
Chapter 4
My guests are both Vegetarians - I am not - omnivore. Having studied the menu, this was a vegetarian’s nightmare. Being polite (the cheeseburger option was most tempting), I went with the flow and three carrot/coriander/leek soups and crusty bread were swiftly delivered and quickly consumed. A second round could easily have been eaten up.
Unexpectedly, our (three hour) discussion transpired to be led namely by myself. It turned out that Lon was namely interested in anatomy related matters, but also very interested in issues namely such as preventative measures and how to rebalance internal human environments when faced with rogue bacterium and proteins.
I mentioned my contact with Dr Ellie Philips and how she had kindly sent me a shipload of Xylitol products and brought out some mints and gums. Lon quickly produced his own supply of Xylitol gum and an all round teeth cleansing moment took place. After all, in dental terms, this was one of the direct points of having this discussion. We practice what we “preach” type thing I suppose.
Lon knew a bit about ‘Prion disease’ but not much on the anatomy. The best way to respond was to describe the apparent misfolding of normal protein PrPc (of which little but some is known about) and the “misfolded” version until recently described as PrPsc. Now knee deep into scientific matters, Jerry walloped down a rather tasty looking Irish Coffee and went upstairs for a well earned rest judging from what I could gather.
At this point, it was reasonable to re-dig my rucky and pull out further documentation. In the end, all “cards” were on the table (literally) and I told him to take away whatever he wanted. He did and thanked me for being so open.
Chapter 5 – The Book
My Xylitol contact list. This was and still is a working document, i.e., it is incomplete and subject to change. This was of immense interest to Lon. Lon (as I knew already) has a Patent on his Xlear Nasal Spray. Osmotically speaking, this is where everything made total and complete scientific sense. So, fighting bacterium is what mainly drives Lon. If I spin back to part of what he wrote to me if February, this now makes better sense.
“I am working on a book that deals with shifting our paradigm from the mechanical model to a complex one that honours the adaptations we and our evolutionary ancestors have made that helps us to deal more effectively with hostile agents in our environments. The billion dollars made by blocking such adaptations (fever, diarrhoea, rhinorrhea, to name just a few) is a large force that will not take this kindly”.
Around this time, Lon expanded upon his current book. This largely is complete pending a publisher that is sufficiently interested in making this widely available.
Currently dubbed “K C”, this book is about the Complex Adaptive System (previously dubbed CAS) When rogue bacterium enter their new “host”, they are extremely good at self replication and in certain terms millions of times over. Lon’s work deals with bringing internal environments back to their natural status and thus taming unwanted host particles. The rampant smart particles do not/never anticipate such a fight back and eventually go on to die. The system can therefore be restored back to normality not by fighting the bacterium, but by reinforcing the natural environment.
Does this work? It might do. Has this been tried? Yes. See here. Specifically, in relation to ear infection, a successful clinical trail (“n” of ~ 160 measured via similar “n” control) took place around 2005 but not accepted for publication. Since I am now aware that unpublished material can be less, equally and/or more interesting than published material, I look forward to viewing this section of the Author’s currently unpublished material. On the face of it, Xylitol as already very well documented in fighting off bacteria that causes dental decay is apparently effective when delivered intranasally.
Fully aware that Lon has patented this, this was not surprising. That said, in the commercial world that we live in, this was not surprising. Indeed, Lon mentioned a team in the US that cottoned on to “CAS” and intranasal Xylitol and carried out a clinical trial. Kind of handy for Lon when he found out and told them that he had the Patent.
Chapter 6
With the contents of my rucky pretty much now everywhere, but some still not on the table Lon looked at what was still in rucky. I told him to look through – no problem.
Around this time, we spoke about a number of issues but preventative measures came up several times. He mentioned a book that he and Jerry had just finished reading by a Dr Colin Campbell entitled “The China Study”. This I must check out.
My new friends seemed quite taken by their copy of handout “CJD Alliance Glasgow 2006” In particular; Lon was extremely interested in connecting with the Chair of that discussion, Dr Mark McClean. Moreover, Lon was I sense quite taken by Dr McClean’s summary from the Minutes of the discussion:-
“What have we achieved this afternoon?”
1. Three Medical Presentations. One on diagnostics, one on therapeutics and one on the problems inherent in tackling the different TSE strains. We asked today's most important question - "what about systemic PrPd?" 2. The Legal Presentation - a vital branch in the past and present multidisciplinary approach to CJD/TSE. Mr Body's success reflected his specialisation in the field - something our National Health Service should mirror. 3. Inevitable improvement of future research by our interested parties as they take away new knowledge acquired at this afternoon's Discussion. 4. Further essential 'networking' between various interested parties - not to be underestimated.
Before closing this discussion, a number of points came to mind. Open Access in terms of medical research had been touched upon but I wanted to raise this again. Lon mentioned that he had received three requests for his first published Paper and zero for his second. We warmed superbly to the philosophy of Open Access via the Internet and asked how long I had been using the web. Six years. “Do you use Google to search for medical research?” Lon enquired. No, at the moment, PubMed but also now Open Access outlets and stressed the point that in Abstract form, it is impossible to fully evaluate a Paper. Having mentioned my recent conversation and contact with Peter Suber, Lon vigorously warmed to the OA philosophy and fully intends to make direct contact with him. Excellent news.
Having shared with Lon a copy of my Xylitol contact list, I sense he was a bit taken aback by this. Whilst he has a hard copy, I stressed that this was an e-document that contains many many active links. Copy now emailed to him.
Lon made mention of his Son Nathan and told me a bit about him. I asked if he had any other children. Thirteen. I thought he was being whimsical. No, he has fourteen kids via his first wife. Wow. For a period of around twenty odd years, he was certainly active. This man certainly has the largest family that I am personally aware of.
Chapter 7
As we closed up, I took stock. I had and indeed have a number of ‘action points’ that I will follow up. These were unexpected but much welcomed. Despite doing most of the talking, I had spent the afternoon with an extremely intelligent but somewhat reclusively mind mannered man. Whilst we may not meet again, we will certainly keep in touch – no question.
Would I require to conjure up another mystery taxi I was thinking? Thankfully no as Lon kindly offered to drive me back to the railway station in no mans land. As it happened, my main map came in rather handy after all and our direct route happened to be about twice as short at that of the one used by the mystery taxi driver !! This appears to be global phenomena. As such, the aforementioned comment about why Scotsmen only use such means of transportation sparingly. I rest my case.
As we arrived at my station, my twice an hour (I had no idea when) mystery train was there and just about to head off. A hasty goodbye and off I ran and JUST managed to board.
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