Welcome to the first Silent Bleed quarterly newsletter |
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Hi, welcome to our first quarterly newsletter.
We aim to connect our members, inform everyone about the latest research we have access to, and give everyone a focus so that we can get ahead of Superficial Siderosis. Thanks for subscribing. |
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Video interview with Steve Ricketts on his journey with Superficial Siderosis, keeping well and his charity run for The Silent Bleed. Breaking news from Prof David Werring and the team at Perspectum on the latest research and upcoming projects. A slide show about The Silent Bleed charity. Who are we, what do we do and how can you join in?
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Steve (who has Superficial Siderosis) realised he was racing against time, so he decided to take on the Manchester Marathon to raise money for Superficial Siderosis. Charity Trustee Amanda Fearn talks to him about training, how Superficial Siderosis affects his life and the incredible achievement that has so far raised over £3k for The Silent Bleed.
Click on the image to access the interview. |
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Who/what/why - a slide show |
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What is Superficial Siderosis, how rare is it and who are The Silent Bleed?
When charity Chair Jason Roberts was diagnosed in 2015 there was only a handful of medical papers online and a blogger in New Zealand (the awesome Dave Hill who we've sadly lost). The world was a lonely place for someone with the condition.
Then we met Superficial Siderosis expert Dr Michael Levy online and he's been helping us ever since. Nearly a decade later, The Silent Bleed covers the globe, brings people together and supports research, acting as a hub for information, fundraising and community. This is a slideshow of our history and mission and how we feel about our community. Click on the image to watch. |
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Superficial siderosis research update The rarity of classical infratentorial superficial siderosis means that the research opportunities are few and limited in participant numbers. We are delighted to announce that two teams (from University College London, headed by Professor Werring) and the Perspectum Group) have joined their efforts and are preparing a research project aiming to measure the levels of brain iron using magnetic resonance imaging (MRI).
You can find more information about the study, how to register your interest and comments from Dr Levy by clicking the MRI image.
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| | Have you any news that could be useful to other SS sufferers, a story to share how about obstacles you have overcome? Tell us about it and you may well be in the next newsletter. | | |
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| | Fancy some fun raising funds for research and our work? Host a quiz at the pub, have a cake and craft sale or like Steve, get your shoes on and run (or walk) a race. We'd love to feature your event in our newsletter and social media. Please get in touch if you need help and support. | | |
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That's all for now, thanks for reading.
If you know anyone who'd like to receive a copy of this, please point them towards our website where it's easy to join our mailing list. And please get in touch if there's a story you'd like us to include. Jason Roberts and the crew at The Silent Bleed |
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