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Wednesday, February 26, 2014

Donations Please

In 2012 I travelled to Chicago for a hematopioetic stem cell transplant (HSCT) to treat my Chronic Inflammatory Demyelinating polyneuropathy (CIDP).  I had to go to Chicago because at the time this treatment was unavailable in Australia.  Two years later, this treatment is still unavailable to most people in Australia and it doesn't have to be.  For the people that know me you know how remarkable and effective this treatment has been in giving me back my life.  If you don't know you can check out my video here:-

CIDP HSCT Story

HSCT is nothing new.  There are many haematological disorders and cancers that have been treated by HSCT since the 1960's.  For various reasons it has not been used for autoimmune diseases until recently.  And yes, I say autoimmune disease not just CIDP because it can be used to treat most serious autoimmune diseases from Crohn's disease to Multiple Sclerosis.

The good news is that it is on the radar.  We know that eventually it will be the gold standard treatment for these types of disease but for now we have to focus on proving its effectiveness.  As Australians we need to ask the question of whether we want to be one of the leaders in this research or do we want to be dragging our feet ten years behind the rest of the world including Israel, Russia and India.

The work we do here in Australia will also have international benefit.  The more centres around the world that are doing trials, the more data we can collect ,the more statistically correct it will be and faster we can have the trials completed.

In order to not be left behind we are looking at setting up a not-for-profit organisation that can be used to raise money, create awareness and lobby the government to support stage three trials which will give us the proof to get this treatment available for all who need it.  The first step for us is to finance the startup costs.  You can help do this by leaving a donation on the GoFundMe page linked below:-

GoFundMe

Any funds collected over and above the startup costs will go into promoting stage three trials.

Make no mistake, the outcome of these trials will have a significant impact on this country and the world.  It has the potential to be the most significant medical advancement since chemotherapy treatments became available in the 1950's.

Please give generously.  The thousands of people with severe autoimmune diseases will thank you for it.

Stay well:)

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