Getting ahead of Superficial Siderosis
If you've been diagnosed with the rare neurological condition superficial siderosis, you're just one in several million globally - that's how rare it is.
And if you're struggling to find relevant information, then you've come to the right place. Find out more about superficial siderosis, view a webinar with a specialist or you can even download or order leaflets to share with family, friends and physicians. There's also information on symptoms, medication and life with superficial siderosis on our Q&A pages with Dr Levy, to help you make decisions about the best way forward.
We're registered as a charity in the UK, so we're governed and regulated to handle donations and make grants - and we help people all over the world.
Quiz nights, live music, charity fun runs: from the everyday to the extraordinary, we've done it in order to raise cash for research. Talk to us if you'd like to run your own event and have some fun while you're doing it.
We're also looking for volunteers. Whether you've a few hours to spare to raise cash over tea and cake or you're a networking and marketing expert, we'd love to hear from you. We want to push our charity forward and support as much research as we can.
We're a small charity run with minimal running costs, so more of what we receive goes towards research and support. A one-off payment is always gratefully received but a regular payment of just five pounds a month (a couple of coffees) helps to keep the momentum going.
Our friendly community has already come such a long way but we couldn't have done this without the love, care and dedication of our volunteers and donors. Check out the blog for more about what we've been up to recently and the other organisations we work with.
We're proud to work with some amazing people.
We work closely with writer and activist Rori Daniel, and her site, Living with Superficial Siderosis is an excellent source of further reading. The Patient Registry is a vitally important resource for research - sign up today and make a difference.
We're also proud to work with Dr Michael Levy at Johns Hopkins in Baltimore and indebted for his help since the beginning. He's given his specialist knowledge in answering over two hundred questions and produced a helpful webinar about superficial siderosis.