What if everyone who's signed the petition donated £100? 500 x £100 = £50,000. By my calculation that would buy us a doppler scanner. Voila. Seemples, etc.
If we're seen to be raising money ourselves it may buy some column inches for the CCSVI cause.
Bringing Liberation to the UK
money
We can dream. There are a few difficulties about organising this from an online site to do with trust and bank accounts etc... We would need to find a centre first which would be willing to do the work and then send money to them to train and buy the equipment if necessary. Let us see what we can do without the money...
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
SkallyWags, I think you've probably got most of what's need there. I think Marie gave a very good overview on some of the misinformation being spread and gave a very clear definition of the format of Zamboni's tests...
I've been speaking with Stefan from the FB group and he has some very interesting information on the format of the dopplers and what is needed and is working with an interventional radiologist to create a workable protocol...we should keep our eye out for that too.
John/Squiffy not sure what protocol to follow..name or nickname?
I wondered if you could support us, does the MSRC have any information from their archives in relation to the costs to the NHS for an MS patient over a year or their lifetime?
With this info I think we can really start to gain traction with a push on MPs.
I've created a list of all the University based hospitals and am just sorting out addresses etc. The I guess we'll need to identify indiviuals from those organisations to contact.
Once we have the pack agreed, we can start getting stuff out there.
I've been speaking with Stefan from the FB group and he has some very interesting information on the format of the dopplers and what is needed and is working with an interventional radiologist to create a workable protocol...we should keep our eye out for that too.
John/Squiffy not sure what protocol to follow..name or nickname?
I wondered if you could support us, does the MSRC have any information from their archives in relation to the costs to the NHS for an MS patient over a year or their lifetime?
With this info I think we can really start to gain traction with a push on MPs.
I've created a list of all the University based hospitals and am just sorting out addresses etc. The I guess we'll need to identify indiviuals from those organisations to contact.
Once we have the pack agreed, we can start getting stuff out there.
media
That is great news Colm, I would think that a personal story backed up with some information is what they are looking for. Maybe we could ask someone who has been through the procedure to tell their story.colmmc wrote:Hi
I have just been e mailed by a Reporter from the Manchester Evening news
wants to do a story .whats the best way to spin this ? any Ideas ?
I all ears. how far off is the info pack?
colmmc
Just my thoughts....
But fantastic lets make the most of this...
Michele, warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
-
SkallyWags
- Getting to Know You...
- Posts: 23
- Joined: Sun Dec 27, 2009 3:00 pm
Brilliant news Colm. I agree with Dovechick.
We have many success stories to choose from...what about Edser? Erika?
What about the guy that went to the States...Alex somebody?
Do we have a list of people...I guess we do from this forum?
Also I think we need to be clear about what we're fighting for:
I'm fighting to have CCSVI researched in the UK and proven/disproven as the cause of MS or as a valid treatmenty and if proven, to bring the Liberation treatment to the UK for all as quickly as possible.
I have no experience in dealing with the press which is why I was looking to have someone come on board who knows the ropes. I think the pack will be too much of a technical resource for a reporter.
I guess he's come via the petition.
One thing I would avoid at this stage is wading in with points about pharmaceutical companies blocking progress and Neurologists loosing sight of their objectivism. There's no evidence for any of this nor do we care. We have a task to do and along the way we'll find obstacles, whatever they we'll climb them or go around. There's no point wasting time complaining about them.
Definitly mention the CCSVI facebook page and the group page, this will hopefully start to focus membership a little.
I would go with a line like:
We realise that new theories and ideas need alot of effort and energy to dislodge existing and accepted understanding and get them into the mainstream. Before we can even start on that, we need to provide indefensible evidence to support any such theories. We aim to provide that so that people can start getting treatment or get back to living their lives as best they can. MS sufferers understand the urgency of this better than anyone and are willing to do what is necessary to get this moving forward.
Sorry if that was a bit of brain dump...
We have many success stories to choose from...what about Edser? Erika?
What about the guy that went to the States...Alex somebody?
Do we have a list of people...I guess we do from this forum?
Also I think we need to be clear about what we're fighting for:
I'm fighting to have CCSVI researched in the UK and proven/disproven as the cause of MS or as a valid treatmenty and if proven, to bring the Liberation treatment to the UK for all as quickly as possible.
I have no experience in dealing with the press which is why I was looking to have someone come on board who knows the ropes. I think the pack will be too much of a technical resource for a reporter.
I guess he's come via the petition.
One thing I would avoid at this stage is wading in with points about pharmaceutical companies blocking progress and Neurologists loosing sight of their objectivism. There's no evidence for any of this nor do we care. We have a task to do and along the way we'll find obstacles, whatever they we'll climb them or go around. There's no point wasting time complaining about them.
Definitly mention the CCSVI facebook page and the group page, this will hopefully start to focus membership a little.
I would go with a line like:
We realise that new theories and ideas need alot of effort and energy to dislodge existing and accepted understanding and get them into the mainstream. Before we can even start on that, we need to provide indefensible evidence to support any such theories. We aim to provide that so that people can start getting treatment or get back to living their lives as best they can. MS sufferers understand the urgency of this better than anyone and are willing to do what is necessary to get this moving forward.
Sorry if that was a bit of brain dump...
-
SkallyWags
- Getting to Know You...
- Posts: 23
- Joined: Sun Dec 27, 2009 3:00 pm
mention jeff
You could mention Emmy award winning musician, Jeff Beal, who was the first to undergo the procedure in the USA. It was carried out by Dr Dake at Stanford, Calif. His wife, Cheerleader, started the whole CCSVI thread on TIMS, I believe. I've read that he's doing really well.