 Superficial siderosis activists Gary and Rori Daniel deliver a cheque to Dr Michael Levy February 2019, following their trip to Capitol Hill on their research funding trail. |  Jason Roberts and Amanda Fearn raising awareness in the UK |  Jason answering questions and talking to revellers at a fundraising event September 2018 |
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 Silent Bleed team member Paul Toovey Presenting to Professor David Werring at UCHL Queen Square, September, 2016, following a meeting with Michael Levy - an exciting opportunity to discuss next steps. |  Our superficial siderosis friends Cynthia and JK Vile present to Dr Levy |  Tom Potts hands another cheque to Michael Levy, March 2018, with Susanne Wilson behind the camera. |
Research is everything
We're playing a numbers game - more awareness brings about better opportunities for diagnosis and the more numerous we are, the louder we can shout. From talking to our members, we're sure that superficial siderosis isn't as rare as first thought, it's just difficult to diagnose and not enough doctors know about it.
We can't do it with goodwill alone
Money helps. If it relied solely on determination, we'd have found the cure by now but like most people dealing with rare diseases, we're working right at the edge of scientific research. The kind that takes leaps of faith, creative thinking and the kind of simple human dedication to a cause that goes above and beyond the call of duty. Clinical studies need funding to operate, doctors need backing to be taken seriously, and patients and families need to know that they've got the medical community behind them.
The majority of the grants we make go to research, in particular to Dr Levy's studies at Massachusettes General. If you're actively engaged in research or you have a proposal underway, please contact us for more information about The Silent Bleed's grant-making policy.