ࡱ> UWT5@ .bjbj22 %LXX&VVVV<444444444$E5R744  44I4$$$ 4$ 4$>$Z$1|2 V"P2<4_4042Z78Z#78$2782(W0${4444DV$VCOMMITTEE MEETING 8 July 2007 via SKYPE AGENDA Robert Townsend Robyn Oakeshott Chris Boys Vicki Ryan Judy Williams Inge Danaher not able to participate because of technical problems with Skype 1 Confirmation of previous Minutes of the meeting held on 1 April 2007 Noted as a correct record of that meeting by Chris Boys 2 (a) We need to formally admit the following members Alexandria McAlees Darlington NSW Scarab Gillian Duguid Dingley Vic Misdiagnosed Peter Memmell Elwood Vic Peterm Mirek Wozga Cloisters WA Mirek Andrea Rowland Williamstown SA Hellohope Richard Mazzaferri Mooney Mooney NSW RichardM Chris seconds members (b) Date and venue to be decided for this years AGM, which must be held sometime between July 1 and November 30 (because Robert is a bit restricted as to travel at the moment) Date confirmed as Saturday 25 August 2007 Melbourne to be followed by patient networking meeting. Robert to book venue Annual report to members Someone needs to write draft and circulate to Management Committee for comments. As this is the Committee's report to members of their stewardship the completed report should be formally minuted some time in July. Chris Boys volunteered for this and to run draft narrative by Robert before distribution to Committee for consideration. Robert to submit some points for this project. Robyn seconds the surface mailout of members report and AGM. (d) Banking authorities and financial commitments Robert has circulated a proposal to alter authority levels from those set at the December 2006 meeting. Larger levels (authority to carry up NoIR stock plus outstanding orders to a maximum value of $2800) is needed to cope with the bigger sales of NoIRs and the longer delivery times. Robert also proposed that we open a second bank account for product sales as it would make it easier for the Treasurer to record the Foundations other transactions and monitor the product selling activities. Chris raised the issue of why we need to have access to the bank accounts for multiple people. Robert suggested the second bank account to run all NoIR activity through so that if we appoint a retail manager they could check for payments but could not work the account. Seconded Robyn Vital to have website up and running ASAP so NoIRs could then be ordered directly and make things easier for Robert and his successors. Seconded Chris (page 3) If we used an external commercial organisation to sell the NoIRs, prices would need to increase or we would have reduced profit to AAF. If online ordering of NoIRs is set up and running ASAP, Robert is happy to continue for a little longer to be responsible for NoIRs. (e) Changes to Management Committee John Oakeshott has resigned from the Committee to allow Inge Danaher to be co-opted onto the committee until the next AGM. We should record our thanks to John for being a founding member and particularly for his help in the early discussions on how the foundation would be set up. Inge Danaher has accepted the Committee's invitation and her acceptance has been received by the Secretary Please pass on our thanks to John. Inge was formally welcomed by Vicki via text Inge worked for Shell Oil for over 20 years as IT manager. Appears to have boundless energy and lots of common sense and has been helping Aussie Barb with newbies. Inge is happy to help out in any way she can. 3 Patient networking meetings Who wants to schedule any such in the balance of calendar 2007? Robert suggested one in Melbourne after the AGM meeting in August. Chris would really like to do one in Sydney but is a little unsure as to how to proceed. Robert offered to assist with this and maybe join him. Inge suggests 2 levels of meeting eg. wide world and MPers. Robert not keen on this because of off label use of drugs. We could include people not on MP but researching it. Chris agreed to organising a meeting in Sydney probably late September. Robert may go to Adelaide in September this year to assist Vicki with a patient network meeting. See 2b for Melbourne meeting Suggested people to invite are Current Members Registered users on MP.com NoIR purchasers Referring doctors 4 Legal advice regarding promotion of unregistered drugs Robert will circulate a note to committee members prior to the meeting regarding content limitations for any of the foundation's publications (brochures, website etc) and also limitations on the type of other material which the foundation should or should not distribute. Distribution of Science DVD People who could receive Science DVD would be those medical professionals as designated under Therapeutic Goods Act (includes psychologists, physiotherapists & those in biomedical fields). Robert suggests he distribute some Science DVDs to each management committee member. AAF principle is to be inclusive of health professionals. A discussion ensued about Individuals referring people to Marshall Protocol maybe breaking the law? Robert believes the law applies to written and electronic distribution not word of mouth. Robert believes there is a moral duty to state it is a clinical trial. The law is to stop advertising of unregistered drugs and probably word of mouth re website referral does not fit into that category. Robyn to check out this with family solicitor on this matter in the near future. Robert advised that Deakins advice relates to the distribution of material to the public. The Foundation is free to distribute MP related material to medical professionals and medical professionals are free to distribute MP related material to their patients.. Deakins provided advice on wording of trifold brochure. Robert suggests we shelve trifold brochure at this point in time and look at it again after the website is completed. 5 Progress on TGA application for use of Minocycline, clindamycin and Olmesartan in the treatment of sarcoidosis Robert to update if necessary. The work is suspended - not sure whether temporarily or indefinitely. The reasons being We anticipated we could get materials from ARF to support our applications and that is now not possible at present. Clinical evidence that is required for Australian orphan drug applications is much greater than USA. The Australian clinical evidence standard for orphan drugs is no different from that for all other applications, whereas in the USA an orphan drug applicant must only (apart from safety issues) demonstrate that the treatment is medically plausible We would be required to make certain declarations about patents and we are unable to make those declarations at present in respect of olmesartan. If Robert can find a rare enough clinical subcategory within rheumatoid arthritis that meets the Australian orphan drug rules, we may be able to go ahead with an application for that. We would however, need to obtain the co-operation of the Roadback Foundation in the USA who might have clinical trial information relating to the use of Minocycline in such a sub category of RA. 6 Progress on Website Chris and Judy have been delayed by a) Confirmation of legal requirements for content b) Caleb Rudd (web developer) has moved residence and not able to contribute up until present time Chris expressed his concerns regarding 1.Our ability to be cost affective and add value to our members 2 How we may solicit donations 3 Surface mail cost effective Robert now has online ordering of NoIR glasses top of his wish list. Brief Caleb on subset. Judy to circulate consolidated material we have at this time. Document that Chris and I put together within the next week. Robert to send supplementary material to Judy 7 Where to from here - what would we like to do in 2007/2008, other than our present commitments? Refer to budget our financial position. Noir glasses making a great contribution to our income A Conference in 2008 may be possible (within our financial means) Robyn and Robert have also been thinking about sounding out Trevor about coming down to Australia to present at the annual 2008 meeting of the Australian Society for Immunology and perhaps also at one of the regular three day training sessions for younger GPs that are put on by ACNEM (Australasian College of Nutritional and Environmental Medicine). We would then build a programme around these presentations with other sessions with MP doctors. Such a visit by Dr Marshall could cost upwards of $4000 - $5000 but some of this might be recouped from ASI, ACNEM or from other conference participants. 8 Progress on Working Group on Public Health Issues Robert and Robyn to update if necessary August 5 Robyn and Robert to get together with Lloyd Fitch and John Oakeshott in Melbourne to do some forward planning 9 Legal advice from Deakins Robert to seek advice re extent we can make donations for ex-gratia payments to Autoimmunity Research Foundation Without making special application to the Minister for Foreign Affairs (and only in respect of aid to lesser developed countries) we can only use gift fund monies for charitable purposes within Australia and only for purposes directly managed by the AAF. (i.e. we are not allowed to use gift fund monies to make donation to other Australian charities). Robert advised that our public documents regarding the gift fund should make this restriction clear to intending donors. 10 Publicity Robyn says Trevor keen to get AAF to organise some publicity for him for a forthcoming review article in BioEssays on Vitamin D. When published we could take release from MP forum and pass on to Australian publicists. Robert will look at who does most publicity work in medical area. AAF acknowledged Trevors acceptance of adjunct professorship at Murdoch University Australian connection Meeting closed at 6.20pm  !${    " / M N P    $ & - ? M O Z p ~ 8 W j k t w ~ ļظشܬܠhY9hY9hY95hY9hd5h//Vh bhdh\%5hdhd5hvh!ph+h\% h`5 h.5 hd5 huQ;5 hz5 h//V5 h\%5>+,4567GWbm{  N O . [ $a$. 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