I am the founder and CEO of a recently registered not for profit charity, The World-Wide Fellowship of Polio Warriors.
I created this charity to provide relief for all Polio Survivors who, like myself, and now living with the late effects of Polio, or ‘Post-Polio Syndrome’.
This is one of the most debilitating motor neuron degenerative condition in the world, and as it was totally unexpected, the medical profession, health authorities, and governments know so little about the condition that it is almost impossible to receive any advice on the management or long term care.
There are more than 150,000 Polio Survivors in the UK, and almost 24 million around the world, and yet we are totally ignored and neglected, and this has to change.
We are working to raise the awareness of this condition, and empower every Polio Survivor to have access to medical, welfare, and social support, whatever their home country.
Unfortunately when trying to establish a dialogue with the ‘powers that be’, the word ‘Polio’ is immediately met with surprise and a complete lack of interest, with the common response being that Polio has been eradicated from this country for several decades, so why are we wasting time talking about this subject, and we should be working for something much more relevant.
Personally I have been living with Polio for the past 65 years or so, as have millions of other Polio Survivors, and will, ‘hopefully’, be still living with Polio for a few decades to come. More than 50% of Polio Survivors are less than 60 years of age, so for them Polio has certainly not been eradicated, and will be around for many decades to come, and is certainly a relevant topic.
I have developed a member's website www.poliowarriors.org which introduces our Fellowship to survivors of Polio, carers, relatives, and anybody seeking information about Polio, and more importantly, Post-Polio Syndrome, and another website www.poliowarriors.info, which as the name implies contains a wealth of resources and information for everyone living with Polio and Post-Polio Syndrome. This website is linked to a free smartphone App, called Polio Warriors. Membership of our Fellowship is totally free of charge, so we rely very heavily on donations, grants, etc.