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:)
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