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:)

Myeloablative vs Non-myeloablative Revisited

This debate seems to be a regular topic on the forums for HSCT.  And with good reason.  If you are contemplating HSCT it is a question you should be asking yourself.  I blogged about this very topic a while ago and even though I'm happy with what I wrote I have more to add.  A link to my previous post is below:-

Myeloablative vs Non-myeloablative

So what is new?  As the debate rages on I have four points I wish to make:-

1. Since stage three trials for any HSCT are yet to be completed there is as yet no concrete proof of it's efficacy in any form.  However, the evidence is substantial and if you're like me you would believe that it is only a matter of time before we have proof.  My point is that if we still do not have concrete proof of the efficacy of HSCT in its entirety, how can we have proof of which protocol is better?
2. Right now I believe that which HSCT protocol a patient wants is a matter of personal preference.  BUT, if you can't get the one you want you are better off with the other rather than nothing as long as it is genuine HSCT and not one of these half baked shonky treatments from some scungy snake oil salesman.
3. This is a question that needs to be answered but not yet.  Once we have proof of the efficacy of HSCT (and we will) trials can be done to determine which is best.  It is also important to not that there are not simple two protocols for HSCT.  There are several protocols under both myeloablative and non-myeloablative treatments.  On top of that mix you can also throw in autologous (using your own stem cells) or allogenic (using donor stem cells).
4. After the dust has settled I believe there will be room for both types of treatment.  The decision will come down to which disease, the nature of the disease, the patients medical history, current health, lifestyle and the patients own preference.  In short, each case will require its own slightly varied protocol to maximise the outcome for the patient.

At the end of the day the important thing is that you are happy with all aspects of your treatment from the treating doctors and their facility to the protocol they use.  There are no right or wrong answers, just what you are most comfortable with.

Stay well:)

Time to take Action

It has been three months since my last post.  I apologise but I have been busy and where we are at is quite exciting.  I am almost two years post transplant now and although for a purely personal standpoint the treatment has been a resounding success there has been one big disappointment.  Even though there are thousands of people world wide who could benefit from this procedure the amount of people who have actually receive HSCT for autoimmune diseases is scarily few.

Something needs to be done to change this and not in 20 years time when the naysayers have either retired or passed away due to practicing medieval medical treatments on themselves, something needs to be done now.

Personally I feel a little guilty that I have received a transplant and others that could benefit have not so I want to do something about it.  This is not a new endeavour of mine, I have been thinking about this for a while now.  My initial research lead me to try and find another organisation that could help with this goal so I started looking.  I met with many charities, networks, trusts etc but for one reason or another I couldn't find the right fit.

So the next step is to set up an organisation.  There is a group of us that are really committed to seeing this happen with the end goal being to see HSCT being available to everyone.  We have a goal, we have a plan and we are committed.

The first step of our plan is to raise a small amount of funds in order to pay for the startup costs.  If you are interested in helping you can have a look at the GoFundMe page linked here:-

 http://www.gofundme.com/72o5z0

Any help that you can give us would be greatly appreciated.  After we have our startup funds we can concentrate on the stage 3 clinical trials to really advance the treatment.

Stay well:)