Jason Robert - Founder of the Silent Bleed
Jason's Profile
What’s your background?
In 1982 I had a brain aneurysm, an operation was needed to remove some brain tissue. Unbeknown to the medical world (at that time), iron from blood would crystallise over a period of time causing what has been named Superficial Siderosis, 30 years later the siderosis formed causing many health problems with a rapid decline in health. Ferriprox was attained, slowing the declining health to almost a halt.
When I first discovered I had Superficial Siderosis, I was desperate for help, advice, experiences etc however upon discovering that all that was available was a government white paper (https://www.wikihow.com/Write-White-Papers), I swore to create a charity so that no one would be as lost as I was.
What’s your role at the Silent Bleed?
If I had to provide a title, I would say Director and founder. I have always maintained that on my own, I can do so much however, with volunteers (or a workforce) and funds, anything is possible. I am blessed that Amanda Fearn has been working with me on the creation of the charity as well as helping keep an eye on my health, in fact she played a major role in seeing that I got Ferriprox.
Why did you set up the charity?
A friend once told me 'from necessity comes invention', this was the primary situation here, so that no one would be as lost as I was as well as having all the facts before me so as to find a way to prevent, suppress and/or cure the problem, I am glad to write that my self given task is well underway, and it has exceeded my expectations, encouraging others to help in research and in raising funds.
What does the charity do?
The charity is a vast resource of information (with regular contributions of information from the head Neurologist on the subject, Dr Michael Levy), it raises awareness as well as funds to (answered above)
What’s your vision for the future?
I look forward to the day when we can 'close up shop' as a prevention and cure is found; however, our goals until that day are to encourage more fundraising, more research and awareness.
I hope to soon be creating an online shop whereby products that assist with the condition can be sold with the proceeds going towards research. We are looking into Payment machines to have at events, setting up a regular newsletter, quality social media and considering our next event.
Apart from the charity and your work, what else do you do?
As I mentioned earlier, 'from necessity comes invention', so The Silent Bleed has been an essential diversion to my secular goals – or has it? Due to my 'rare' condition, I have been able to make known one of my dearly missed occupations, personal fitness training, by making known my availability to my Housing Authority, they are considering a position whereby I will be helping people individually by building a tailored fitness programme to reach their goals, yes, from my disability came the opportunity to get back to my secular passion.
As well as the charity and the probable position of personal fitness trainer, I sell health supplements and am a Reiki practitioner, my Grandfather used to say 'loving your job is essential to quality of life', so true were his words.
What’s it like working with Amanda Fearn?
I was married to her for 6 years, our son meant we had to 'like or lump' the situation of regular contact, we eventually found the friendship we had lost, we have known each other for 26 years so no one knows me better.
Working with Amanda is great, we work very well together, often know what the others thoughts are on a situation or decision and know we can discuss awkward problems without argument. In this, the charity is privileged.