Our inaugural meeting was on Feb 20, 2005 and the Notes have been sent out from Concord. This Bulletin is to let you know what has been happening since. If you find it useful perhaps 3 or 4 a year would be appropriate.
All HSP sufferers at the meeting have joined plus a few supporters – 26 so far. The Melbourne meeting invitations will all be out this week—April 24. I have started making arrangements for an Adelaide meeting in May and have made contacts in the other States with offers of support. In each case I am working with the central State or University supported service.
There are practicing neurologists who offer care to patients and do not see the value of referral to the central service or the patients themselves do not wish to be involved. This raises the issue of just what percentage of HSP sufferers we are reaching—particularly outside the Cities. To this end I sent the attached note to the Australian Association of Neurologists. They declined and I respect their position. I have written to a teaching hospital Prince of Wales (also attached ) and have not received a reply but will try more.
It is important that every HSP sufferer in the country can have a choice of becoming a member. With that in mind, comments would be welcome, eg. Any volunteers to help build a neurologists mailing list?
There is much more to be done in this area. The more we are (and seen to be ) representative of all HSP sufferers in Australia the more we will be heard by those we are asking for support in kind and financially.
Steve Lunn has completed the development of a membership database and this will be the first item sent via email. The names collected from the Victorian meeting will be added to the database and so on. The non-internet people will have it mailed.
We have opened a savings/cheque account with CBA. Grant Rickard is the acting treasurer and he and I are signatories. When we build up funds we will use this as a linked account for a higher rate internet account.
Deductible gift recipient status has not yet been granted by the ATO. I have responded to their questions but no reply so far. The facts are we will be competing with like organisations for funds and can not be disadvantaged.
This was achieved some time ago but under a slightly different name. The register has to be changed but I will delay until we have an address and phone number.
I have written to the CMT association as Garth Nicholson advised they may be interested in a 50/50 split with their offices. However the offices have to be staffed from 9 to 5 and that will be difficult. An option to use a secretarial service to provide an address and to take and send on messages and emails is available but that would burn about $2,000 per year. Con Ziros is working up a scheme where the work load could be shared. Communication with overseas affiliates and local genetics and other bodies have been delayed until we have an address.
Attached is the latest version of the Charter developed by Garth Nicholson, Martin Delatycki, Dick Cotton (all members of the medical and scientific advisory team) and myself. Hopefully we’ll get sign off on this or a version thereof at our inaugural AGM.
Website and leaflet
These are in progress but they should be advanced by the end of this month. The leaflet has to precede any fund raising activity and so does DGR status. And we can’t print a leaflet until we have contacts.
Prof. Dick Cotton was able to secure agreement of the NH&MRC (National Health and Medical Research Council), the major Gov’t funding body, to accept a late submission. His subject was gene diagnostic testing for rare diseases—not just HSP. He gave me the opportunity to comment at short notice as he was up against time. The attached two pieces were included in his submission unaltered. We have been heard where it matters and I will follow it up.