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Field Officer/Administrator:
Jenny Noble
16 Woodleigh Place
Ohauiti
Tauranga
New Zealand
Ph 07 544-8868
Email jenny.noble@xtra.co.nz
Charities Commission Registration CC24962
John's Journal - Issue 3
This journal is a diary of John Forman's efforts to promote research and improvements to information and clinical care for Lysosomal Storage disorders, and to develop the support group, LDNZ. It is written as a record of events and contacts, and to assist those who may wish to pursue any interest in the disorders by informing them faster of what has been done, and who is doing what.
August 1999 - October 1999. Funding and Fundraising
The month of August sees another six meetings with the last of the officials I can find, who would have some interest in Lysosomal Storage Diseases. By now every relevant person in the Health Ministry, Health Funding Authority and health research agencies, should know what is on our agenda. The next steps will be to reinforce those messages.
27 August
A lengthy and very useful chat with Leslie Middleton, policy advisor with the Ministry of Research, Science and Technology. Naturally I emphasise the problems relating to funding of research on rare diseases, and the apparent built in bias against them. The utilitarian ethic of the greatest good for the greatest number is an inadequate policy to apply when it results in those with rare disorders being effectively discriminated against, by being denied an adequate share of the resources. Although discrimination is not the formal policy, our argument is that this is the actual end result. It is also likely to be the reason that most countries put such few resources into rare disease research. Our position is that there should be some inverse ratios built into the decision making process to balance things out and give more of a fair go to rare disease research. Leslie agrees to look at any information we can provide on this issue, for their next policy review.
30 August
A minor breakthrough. The first grant of NZ$1000 is confirmed following my application to a local bar and restaurant The Big Chill. I can now send this off to the International Society for Mannosidosis for their research fund. A small start but a significant one.
Also during August 1999
I find a new internet list for battens disease set up by Philip Rhoades, a relative of an affected patient. Philip has a background in genetics and computers and is based in Sydney. The address for his list is battens-list@prix.pricom.com.au
We form the NZ Lysosomal Storage Diseases Trust (short name Lysosomal Diseases NZ) to give an official status to our lobbying and fundraising efforts, to try and ensure that there is maximum co-ordination of effort, and to make sure those affected by even the rarest of these conditions will have a NZ support group to connect to.
Judith puts her skills to work and designs a website for the Support Group. It should be posted in September.
September 1999
What a month. The website is up and running, but the process of drafting and publishing a web page is interesting, if not a little stressful. However it is now completed and published for all to see. Little time for anything else this month other than some calls to our mailing list to make sure we have the correct contact details. Success! Speaking directly to those on the list draws out another 5 families and our mailing list grows again.
4 October
Our website has been publicised to over 40 key people in NZ and world wide, and already we are included in links in 3 other international websites.
5 October
More success. After weeks of searching I make contact with the Gaucher Association of NZ. They have a mailing list of 17 and despite their fortunate position of having a treatment available for Type 1 Gaucher (Cerezyme), they have ongoing anxiety about the willingness of Pharmac to continue the funding of the treatment. This shows the need for all of us to be allies to each other in our common goals of ensuring not only the development of the therapies, but the full application of them to affected people when they are available.
19 October
Letter of support sent to accompany Dr Dave Palmer's funding application to the Health Research Council, to continue his work on Batten disease. Here's hoping - if he can't get approval for research when NZ has the best animal model of that disease, and has led the world in research into Batten, then I think the rest of us will all be in serious trouble with our hopes for accelerated research.
26 October
Applications prepared to local bar and casinos for a contribution from their gaming machine profits. These applications are for LDNZ administration costs, conference attendance for the Australian MPS Conference, and the International MPS conference in 2000, plus a special target of $25,000 to contribute to Mannosidosis research. The total budget through to the end of 2000 is $51,700 and further applications to charitable funds will follow in the next month or two. Realistic or optimistic? Watch this space.
29 October
With valuable assistance from IHC and Diane Webster of the National Screening Programme, we get our information letters off to all NZ Paediatricians to introduce our group and provide them with contact information to pass on to new families. Another job done, another month over, more tasks ticked off the list, and on to the next one. To be continued.......