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chasing charlie’s cure

from stage 4 high-risk neuroblastoma

Why are we fundraising? And why has the target increased?…


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As of last week (13th April 2017) we have finally heard from MSKCC, the hospital in New York that is performing the vaccine trial. They have asked for a deposit of US$225,000 (approx AU$300,000) before Charlie can be enrolled on the trial. In the interest of transparency, we have decided to share their letter regarding this here.

Being an experimental drug, the vaccine itself comes at no cost. But there are various medical bills associated with this which we will have to bear. For instance Charlie will need at least 3 bone marrow biopsies/aspirates over the 12 months to monitor the vaccine response. This can only be performed in New York. Our private Australian health insurance will not cover any of these costs. Nor will the Australian Government’s Medicare, because it is an unproven treatment.

This AU$300,000 also does not include any of the travel or accommodation costs necessary to get the vaccine treatment. There are 7 vaccine injections given over 12 months, and EasyJet/Tiger Airways don't service the Brisbane to NYC route, so there are no cheap flights!

As a family we will be able to meet some of these costs. We've also had tickets and many many air miles kindly donated to us which will go a long way to helping us do this.

Therefore we have had to raise our target to AU$325,000 (from the initial AU$250,000 which we had estimated last year). This is also to take into account that Gofundme take a slice of commission for their fees etc and there will unfortunately be unavoidable currency exchange fees too.

But we would also like to note that some of the AU$300,000 deposit for MSKCC is to cover unforeseen costs for unanticipated admissions/complications etc. Hopefully this won't be required and we will therefore get some of the deposit returned at the end of treatment. However, there will potentially be costs for further trips to MSKCC in the following year after the vaccine treatment has concluded, to undergo follow-up monitoring etc, which hasn't been accounted for in this total.

Plus there may also be an opportunity to enrol on a second trial after vaccine therapy. This is the  DFMO trial which is also getting some encouraging early results. This will likely be significantly   cheaper than the vaccine trial, but will still require another 5-6 trips to the USA.

  So in reality, we are probably going to need more than AU$325,000 over the next few years.    However, in the unlikely event that we don’t and there are funds left over from Chasing Charlie's     Cure at the end of all his treatment (and once he is in a sustained remission), it is certainly our       intention to donate these to neuroblastoma/childhood cancer charities. If you have any          questions regarding this, please don't hesitate to get in touch with us here, we want to be          open and as transparent as possible.

      Thanks for your understanding and ongoing support.

Team Superman Charlie, 17th April 2017