Hi All, Firstly some personal background on me... one of those 150 from the informed consent pre-trial days. The "goat-serum" was first known as Caprivax but has been renamed Aimspro quite recently. It was initially developed as an HIV treatment but an incredible range of other conditions respond even better as it has turned out. MS happens to be the first one to get explored much deeper and things are looking very promising. Aimspro has not been licensed yet but we hope that it won't take long and that means that any practitioner or neurologist can't prescribe it as yet. People who use Aimspro are either those on trials or from the pre-trial days as guinea pigs (such as myself). The treatment has been free for those on the trials - the company uses the money from investors and shareholders to treat people until the product is licensed in addition to its trial and other responsibilities. I am one of the worst, if not the worst responding case so far! And I'm as happy as Larry to be on it! For me it started 6 years ago with a very severe balance disturbance with leg weakness and although the balance improved over the next few weeks, the legs never did. Over the following 3 years I went from walking awkwardly to using a wheelchair, with big downward steps in times of stress. My diagnosis was one of secondary progressive ms. I was introduced to Daval via a friend and thought, "What the hell - I've nothing to lose!", so I became a guinea pig. 2 days after my first shot, I was able to turn in bed for the first time in over a year and a wide range of other small changes started to happen. Anything from fewer leg tremors to improved speech and being able to stand at the toilet without wobbling or holding on! (It's a guy-thing I'm sure you will empathise with!!) So I did improve but not nearly as dramatically as others who were able to walk after years in wheelchairs, throw away frames or sticks, stop worrying about bladder and bowel control, etc., etc.. Several cases have been quoted in the press this year - I'm sure you will have read about them. For the past 3 years since I've been on Aimspro my downhill progress has been utterly halted and even reversed in some areas. I now use a walking frame rather than a wheelchair and I'm still driving - something I was sure I was going to have had to give up by now. Just recently I have taken unaided steps for the first time, I walked into the living room and back into the kitchen - around 30 (very slow and cautious) steps! I have had good improvements all round. Mind you, with MS any improvement is a good one! My legs are generally a lot stronger, I don't get tired as I used to, my appetite has returned too and I am very positive for the future as I expect more improvement as soon as my divorce is behind me (as the stress is accepted as often the single most damaging event for MS sufferers). I am now living with my partner and we want to get married as soon as we can, something I never thought would happen to me! I had resigned myself to a life of ever more limited scope, decreasing fun and increasing disability and loss of independence. I now know that this doesn't have to be the case - at all!! I was seen by Prof. Angus Dalgleish, one of the lead scientists with Daval and a world leader in his field, when I started the treatment and he told me that even if my progress was only halted and not reversed then this would constitute a minor miracle. Well I'm living proof of miracles then! I shouldn't really get your hopes too high just yet as there are still legal hoops to jump through and then the process of selling the license, then production and distribution, so it will take a while yet. That said, when Aimspro gets licensed there will be no time lost in getting it to market. I thought you might also like to know about a meeting I went to last week. It was about starting a lobbying and support group to help speed up the process of getting Aimspro into circulation, as one of its aims. The good news is that we have agreed to open invitations to all parties to participate, with the exclusion of Daval and trial personnel for obvious conflict of interest reasons. What we are proposing to get off the ground asap is an organisation to lobby for the promotion of the trials, licensing and general awareness of Aimspro, the serum. Naturally we cannot fund-raise for Daval - that area would have to be limited to funding for our own cost of operations which, we hope, will be quite low. There is still a lot else we can do, from lobbying our MPs and other influential people to asking questions of our GPs and consultants. This is where ordinary people like us (sufferers, family and friends on the informed consent pre-trial list - like me, patients on the trials themselves and equally those who would might have an interest in speeding up the process of making it available to the general population) can have a big impact because "people power" is a very effective tool indeed. We are expecting to include in our short-term aims a website with general information on the treatment (downloadable), press articles, case histories, individual contacts (mainly patients) who would be willing to talk or email with public enquiries about treatment, others who could handle media enquiries and similarly to re-direct enquiries about investment. Other suggestions, such as a discussion board, charitable status and organisational fundraising, are also being looked at. Regards, Mark I will post a notice here when the site is up and runningSubmitted 8/5/2004 9:57:37 AM
