J.K. Rowling

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

J.K. Rowling

Postby hargarah » Thu Dec 29, 2011 7:07 am

I was listening to Dr. Hubbard's latest YouTube video, where he explained why a few million dollars would do the trick for MS Patients.

So I remembered that the Harry Potter Billionairess gave 10 million pounds ($15,500,000) for MS Research.

Simple question: Where did that money go?
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Re: J.K. Rowling

Postby cheerleader » Thu Dec 29, 2011 12:04 pm

It's making a nice, new building right now.
You can follow the progress on the Edinburgh MS Research page on Facebook.
Complete with pics of ground-breaking and time capsule burying.
https://www.facebook.com/EdinburghMSresearch

The author J K Rowling will bury a time capsule to mark the start of building work on a research clinic for patients with multiple sclerosis and other neurodegenerative diseases.

The clinic at the University of Edinburgh is being set up following a £10 million donation from Ms Rowling and is named after the Harry Potter author’s mother, Anne, who died of multiple sclerosis aged 45.

The capsule will contain accounts from patients living with multiple sclerosis and other neurodegenerative diseases as well as contributions from clinicians on current treatments and their hopes for the future.

The Anne Rowling Regenerative Neurology Clinic will focus on clinical research, targeting discovery of treatments that will slow progression of neurodegenerative diseases, with the ultimate ambition of repairing damage.

Work at the clinic will also seek to provide insight into conditions such as Alzheimer’s disease, Parkinson’s disease, Huntington’s disease and motor neurone disease.

Ms Rowling said: “I am both delighted and moved to be marking the start of the official building work for the Anne Rowling Regenerative Neurology Clinic. This time capsule captures how it is for people living with MS and other neurodegenerative diseases right now, and the current state of research.
“I believe that this Clinic will have a huge positive effect on both of those areas in the future. I am enormously impressed in what has gone into setting up the Clinic so far, and I look forward to seeing it completed and making further great strides in research and treatment.”

The clinic, which will become operational in 2012, will be housed in a purpose-built University facility alongside the Royal Infirmary of Edinburgh at Little France and within the flagship life sciences project, Edinburgh BioQuarter.

The new clinic follows the creation of the Centre for Multiple Sclerosis Research, also at Little France, in 2007, which has also received support from Ms Rowling.

Siddharthan Chandran, Professor of Neurology at the University of Edinburgh, who will lead the clinic, said: “Neurodegenerative diseases are one of the major challenges to modern medicine. Within this group of devastating disorders, MS disproportionately affects the Scottish population.

“All patients with these tough diseases need treatments that will slow, stop and ideally reverse damage. This clinic will pioneer a range of studies that over time will improve patients’ lives through innovative clinical research.”

Clinical academics will work closely with existing neurodegenerative disorder researchers at the University of Edinburgh. This will include expertise from the Centre for Multiple Sclerosis Research, the MRC Centre for Regenerative Medicine, the Centre for Neuroregeneration, the Euan MacDonald Centre for Motor Neurone Disease Research and the Division of Clinical Neurosciences.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: J.K. Rowling

Postby blossom » Thu Dec 29, 2011 9:15 pm

hi hargarah,

GOOGLE "WWW.CHARITYWATCH.ORG" LOOK AT THE MS SOCIETY AND THE CHARITY WATCH FINDINGS. FORM YOUR OWN OPINION.

it's great that they are getting this building up and the research and hope it can someday bring. i hope.

i can't deny the ms society has helped many people. i have a problem that the "well and in charge" seem to be helping themselves much more!
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Re: J.K. Rowling

Postby Cece » Thu Dec 29, 2011 9:32 pm

Ms. Rowling broke ties with the MS Society over some disagreement.

Her mother died young of MS. If CCSVI may be genetic, and your mother died young of MS, would you get tested for CCSVI? Symptoms are unimaginable imagination and a history of depression....

I would expect she's read the research on CCSVI by now, though what she makes of it, who knows.

It's a tremendous gift to the clinic that will bear her mother's name. When you put that many zeros on, it is hard to comprehend such numbers.... I am all for research, and if we are right that CCSVI is foundational in some way to the etiology of MS, then in short time that clinic will be doing CCSVI research. How could it not.
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Re: J.K. Rowling

Postby blossom » Thu Dec 29, 2011 10:20 pm

cece, that's good to know they parted. when someone has ms or a loved one with ms it can make a big difference in trying to get things moving faster. as dr. zambonni or the hubbards for instance.

ccsvi has got to be researched there. if it isn't there's something wrong. it's opened too many eyes and doors. and of course the upright mri and chiro. should be. whatever it takes. the blood flow having a connection as well as the csf flow to me has already made it's mark as far as i'm concerned. if the right minds and putting this together would all just get together.
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Re: J.K. Rowling

Postby Merlyn » Fri Jan 06, 2012 12:35 pm

Well, I have to hand it to JK Rowling, that's a lot of money. I thank her for her generosity.
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Re: J.K. Rowling

Postby AndrewKFletcher » Sun Jan 15, 2012 3:55 am

Imagine what could have been achieved if a small amount of funding enabled an inclined bed therapy study for people with ms.

Yet to date not a single cent or even an offer of practical assistance has been forthcoming, despite so many attempts to get this study on the right footing.

The only objections I have ever received from the medical profession is that there has never been a controlled study conducted to prove or disprove it's efficacy and until this takes place the majority of people with ms will remain blissfully unaware of the fact that sleeping on a flat bed may be a major contributing factor.

The not invented here brigade will continue to devour great sums of money without producing anything useful for pwms.

The cost of such a study would be to pay doctors and nurses to monitor a home based study against well established methods of scoring the degree of function and sensitivity, fatigue, pain and endurance protocol.

IBT is a non-invasive, safe method that can be conducted in the comfort of an home environment with a simple questionnaire designed to identify any changes over a period of 6-12 months avoiding sleeping flat. Not a lot to ask is it?

Andrew
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Re: J.K. Rowling

Postby Cece » Sun Jan 15, 2012 10:49 am

IBT has worked for me but not as well as actually treating jugular and azygous malformations using venoplasty.
I would think IBT is useful pre-procedure to get an assist from the vertebral veins/plexus and from gravity; and it's useful post-procedure in case of less-than-optimal restoration of cerebrospinal flow; but it is not intended as an equal option in lieu of ccsvi treatment.

A researcher who knows how to design and carry out a trial and analyze results would have to be interested in conducting research on inclined beds in CCSVI patients.

I would expect such research to find that it does have an effect. I think this based on my own experience with improvements after IBT and on the logic of it. So the two things needed are an interested researcher and funding.

There will be CCSVI patients who, despite treatment and even retreatment, will not have sufficient cerebrospinal flow restored. These may be patients with a hypoplasia, or an occluded jugular, or a missed intraluminal abnormality because IVUS was not used, or patients with an extraluminal compression such as muscular. IBT may improve lives, if it can be shown to help such patients, or to prolong the time to further disability accumulation. It is understudied.
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Re: J.K. Rowling

Postby AndrewKFletcher » Tue Jan 17, 2012 2:19 am

Cece
TIMS is a very powerful community that attracts the researchers you mention. Given the fact that the results from people trying IBT have reflected the results from the first and second pilot studies, we should at least try to establish a controlled study and I feel pretty confident that this could be achieved with the help from people using this forum.

I have seen what this forum has done for CCSVI research so I know what I have suggested now and previously is achievable but motivating people to get behind this therapy and help push it over the top of the research hill is painfully slow and only because I don't have the white coat and medical qualifications.

I have absolutely no doubt that we will achieve great results for pwms

We need the forums help to achieve this last hurdle.

Kind regards

Andrew
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Re: J.K. Rowling

Postby CureOrBust » Wed Jan 18, 2012 3:04 am

AndrewKFletcher wrote:I have seen what this forum has done for CCSVI research so I know what I have suggested...We need the forums help to achieve this last hurdle.
This forum did what it did BECAUSE of the published studies, not the other way around.
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Re: J.K. Rowling

Postby Lyon » Wed Jan 18, 2012 5:27 am

CureOrBust wrote:This forum did what it did BECAUSE of the published studies, not the other way around.

Not to be cynical but a valid question Cure, do you really believe that the results of the studies so far and the seeming validity of those studies justifies the degree of interest in CCSVI to date?

I know it remains that nothing is certain and I'm not trying to pin yoiu down to hold it against you later but I just want your perception to date....
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Re: J.K. Rowling

Postby AndrewKFletcher » Thu Jan 19, 2012 4:21 am

Cure

Trying to understand your response, so you are saying is if there was no published paper then this forum would not have become interested in CCSVI? This backs up my request for assistance to establish a controlled study and to publish papers based on that controlled study. Nevertheless the huge amount of attention to CCSVI and surgery on this forum is astonishing to say the least. If 1% of that attention could be generated for a controlled IBT study we would be on our way.
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Re: J.K. Rowling

Postby EJC » Thu Jan 19, 2012 1:21 pm

He is suggesting it's self fullfilling.

CCSVI creates interest, therefore the forum subcategory is created to discuss the subject, which appears in google searches, which attracts more people, which creates more discussion with more people.

This generates more interest and on and on.
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Re: J.K. Rowling

Postby Cece » Thu Jan 19, 2012 2:04 pm

People were able to take Zamboni's research to IRs, who had no knowledge of CCSVI, and get them interested. Cheerleader to Dr. Dake, bestadmom to Dr. Sclafani, and so on. Without the research, it couldn't have happened.

IBT is more of a medical management technique (to manage the problem without treating) and IRs have the skills to actually treat. I am not sure who would take on researching the use of inclined beds in MS patients. There is logic to the idea of inclining beds. If it were something that could be sold, perhaps it would have been funded and capitalized on already....
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Re: J.K. Rowling

Postby AndrewKFletcher » Fri Jan 20, 2012 1:06 am

EJC wrote:He is suggesting it's self fullfilling.

CCSVI creates interest, therefore the forum subcategory is created to discuss the subject, which appears in google searches, which attracts more people, which creates more discussion with more people.

This generates more interest and on and on.


Could we have a category for Inclined Bed Therapy on the forum and move all relevant posts there? This would be a constructive move and could begin to generate significant attention to IBT and may help people to feel confident about sharing their experiences using this therapy without undue worry about posting in a CCSVI forum.

Andrew
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