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For her friend and for Proventus.
Not only did Jan Smylie see the distress of people with Multiple Sclerosis she also witnessed their improvement on the drug Aimspro. As her friend of many years, Angie Garrett needed more funding to continue her treatment and as Jan knew of the work of Proventus she determined to do something to help all round.
It was a local event that stimulated her interest – ‘The New Forest Half Marathon’ – and she determined to complete it as a sponsored event. Jan had never done any running and after trying to start alone she joined the New Forest Runners for advice and support. For over a year she has constantly worked at building up her training regime and has gone from 2 miles to 5 miles, then on to 7, 10 and eventually to the thirteen and a half mile race on Sunday 16th September.
Supported by work from colleagues from Roger Murray hairdressing Salon and members of Proventus she completed the very hilly course in 2 hours. An absolutely marvellous effort!
How few of us are ever able to say that another person made this amount of effort for us? Well this time all those with MS can thank Jan Smylie for bringing their plight to local, national and international interest through news paper coverage as well as the Proventus News Letter and web site.
From all of us Jan please accept a heart-
I was delighted to read the press release on the Daval website, stating that Daval
International had been vindicated for making the decision in 2004 to terminate the
first full-
Since a considerable period of time has been lost for those in need of this type
of medication, I would be interested to know what action will be taken against St.George's
Hospital and the pharmacist responsible for the sub-
It is interesting to note that the MS Society have not given this press release the same coverage as they did to the Guardian Newspaper article on Monday 11th June 2007, which was less than complimentary about AIMSPRO and its manufacturer. What concerns me is the fact that MS, particularly secondary progressive, is an untreatable condition, and while I recognise the need for caution with respect to potential treatments, the perception I have with regard to the MS Society and their advisers is that they do not wish to consider the possibility that AIMSPRO could help those affected by this dreadful condition.
It is appalling that in this day and age, and with the many £Ms and $Ms raised by the MS charities that Multiple Sclerosis is still, by and large, an untreatable condition. Should the MS charities be proud of this fact?
Gordon Ellis (Proventus member)
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During the past year or so I have been reading the Proventus newsletter with a lot of interest partly because it’s given me hope for my future. I suffer from secondary progressive MS.
I’ve been thinking. My mind has gradually focused on thinking that something nasty is happening against my MS charity of choice. I know there are not any treatments for my type of MS and Aimspro is my only present hope from what I’ve heard. That is how I see it.
I’ve read the Daval website, and their statement on March 17th confirms what I’ve been thinking. There really is something going on.
Does the Proventus committee know really what is going on? I suspect you can’t tell me the full story if you know it but some facts would settle my mind. Stress levels are getting worse, and that is bad for my MS. Can you help at all?
Yours sincerely,
Clem Hill
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Bottom of Form 1
March 2008
could you please clarify a few points for me regarding the trial in 2004 at St Georges Hospital carried out by Daval International .
I have read on their website that the trial was discontinued because of the misconduct of the overseeing Pharmacist.I find it hard to understand that any professional in his care of duty could be seen to be irresponsilble in carrying out "appropriate standard operating procedures" . I would be most grateful if you could enlighten me with regards to this statement.
Yours sincerely,
T. Paige
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The Pharmacist who mishandled Aimspro during the St Georges trial should be aware that his actions contributed to the early demise of my wife, Hilary. I hope that he is proud.
Hilary died at the age of 57 having suffered from MS for 15 years, although only diagnosed some 7 years before her death. There is little doubt in my mind that Aimspro could have considerably prolonged her life and most importantly increased her quality of life. I say this with the experience of her partial recovery while taking Aimspro as an informed consent patient.
Let us, members of Proventus and the population at large, try to ensure that Hilary’s death was not in vain by signing the petition named in her honour. Let us try to ensure that we have a change in the law such that experimental medication can be legally used, as a right, by terminally ill patients.
Dr David Price
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Dear Peter, Brian and all,
I have read recent comments from other Proventus members
who are
(understandably) upset that time and monies are being wasted on attacking
Proventus, Aimspro and Aimspro's manufacturer, Daval International.
Research funds
are also being dispended for the most specious reasons -
like, for example, do people
with MS ever get depressed?
While I appreciate their ire and agree with it in principle,
I feel that it is futile to complain about an "industry" that is set up to promote
disease, not cure it.
‘MS puts a lot of kids through college’!
That Proventus has DARED to break from the
standard dogma naturally sets it
up as a target. It is inevitable. Time will prove
(just as with the vindication of the halted St. George's trial) that Proventus has
the best interests of the patients as its only motivation.
Best regards,
Nick (USA)
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