Fund Raising details

I wish I could write everything going on right now here. Will do after this is all over. Where we're up to right now is:

i) still trying to get Amgen to release their drug for treatment for Lauren here in Adelaide. They have not approved it still, and we don't know the official reason yet for the 'NO' response to date. The first one via the RAH was about pharmaceutical companies 'protecting their statistics' to make the drug look as good a possible when they go for PBS participation at Government level. The second was because of a clause in the trial Lauren signed before going on it. A clause I don't know what it is but have asked for a copy from the Director at the RAH. A clause the medico who suggested the trial didn't even know was in there.

The current behaviour of AMGEN's executive team is nothing different to how an assassin would operate (in my eyes).

An assassin (I'm no expert on this BTW!!!) would no doubt:
i) have a target
ii) explore options
iii) make a decision
iv) execute the plan
v) have an outcome

In AMGEN's case,
i) they know about Lauren
ii) they could choose to provide the drug or withhold it
iii) at this stage they have chosen to withhold it (official reason I still don't know yet!!! - unbelievable in itself!!!)
iv) work in progress
v) their decision will either give Lauren a chance of further treatment or certain death.

How is their approach currently, any different to an assassin??? Please what do the people really think?? They're approach to date is nothing short of criminal.

I know trials are an important process to get life saving drugs to market, but I'm sure the rules around them, and protection for participants and all Australians (the world for that matter!!) needs to be carefully scrutinised, at the end of the day, and all Australian (even global) citizens must be protected first and foremost. Right now, my experience is DON'T participate in pharmaceutical company trials where it could be a life and death situation. Now's not the time to put my energy into this, but this will be parked for a visit later. I always said, even when I worked for them, "never trust an institution"

ii) Pfizer have a drug which we were told by RAH was an option, then it was a not, supposedly because it was a 'failed drug'. Turns out this is not the case and the RAH are still waiting to hear if we can access it for Lauren. Not sure what's been done on this front to date, but have followed this up with a Director at the RAH.

iii) if we can't get either of these drugs to use here in Australia, we'll have to go elsewhere for treatment which involves massive cost (which we can't cover without fundraising). Time is an issue and we must move fast. Either way we'll need funds for purchase of the drug (possibly even for option i & ii above). Some people have started seed funding (underwriting) the cost (this in itself is a massive story to be shared later) and will be repaid by fundraising carried out now and ongoing. Anyone who's been asking how they can help, this is how you can. We have to be in a position to pay a huge amount by next Friday.

Nathan, our beautiful 13 year old son has already offered his bank account and gone to the headmaster at school yesterday because he wants to do some fundraising activities to help save his sister!!....I can't help but cry every time I think of his selfless act. - Do these drug companies not have a heart to understand one iota the destructive impact they can have on people's lives from distant decisions made in their board rooms around the world!!! Why do we as the people allow this to continue?? - another one to park for now.


Fund raising has been set up via the Leukaemia Foundation South Australia. There were several ways people can donate, but that's on hold for now thanks to the generous support from some, in underwriting the required sum (albeit, we still don't know final figure confirmed via RAH).


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Thank you to all those who have been on our backs for this info. Thank you from all of us in advance. If you want to make a donation only if the money is required for the drug or treatment, but if not used you want it back, that can be facilitated too. Just talk with Simon and his team at Leukaemia Foundation SA. When depositing money please give your full details and contact so if for any reason we don't need the funds or there is excess, it can be refunded if you choose. Either way, it won't be coming to us personally.

Re involving the press etc, please leave that with us for now as there are a few hurdles to jump on this front (not created by the press).

Like I said in a previous post, in this last week I've seen the worst of humanity via the 'institution' and the absolute best. If I cry at night, it's not for fear of Lauren's future, it's from the unselfish acts of so many who we hadn't even asked for help yet!! Many unbelievable stories to share here......look out for the book - maybe that can be my fundraiser for the cause!!!