Forging ahead with the fight against Superficial Siderosis

September 8, 2016

With the charity application lodged, a cheque delivered to Dr Levy in Baltimore and a meeting with Dr Levy and Dr Werring in London planned for next week, it's all go at The Silent Bleed.

 We've had a pleasant summer. It all started with a stand at a country fair in June, where we had fun chatting to the local community in South East England, where we're based.

 

Then there was a charity bake sale at a local branch of the Santander Bank. We were humbled by the cakes baked by the staff in their own time, on sale in a resplendent array of pastel shades. Such friendly, committed people.

 

The summer holidays rolled round and in between working on our respective businesses and days out with children, we put together the final documents for our application to the UK Charity Commission to become a registered charity. We pressed the submit button at 10pm last night. Fingers crossed.

 

And this is the result of every paced stepped, every cake baked, every wrist band sale made: hard cash being handed over to those who can really make a difference. Last week, Cynthia and her son KJ, drove to Baltimore to personally hand a cheque to Dr Levy, to help fund his research. The reaction to their meeting on social media was thrilling. If you haven't caught it yet, head over to our Silent Bleed Facebook page for a video clip that will make your day. Cynthia has also been kind enough to transcribe the meeting for those with hearing problems.

 

An interview with Cynthia about the day and more pictures will follow soon.

 

As for next week, Jason and I couldn't be more excited about meeting both Dr Levy and Dr Werring in London on Tuesday, 13th September. Years ago, when Jason was first diagnosed with Superficial Siderosis, it didn't take us long to track down the Baltimore neurologist's research at at Johns Hopkins. Through networking in the UK, we then learned of Dr Werring's interest in the disease and we couldn't be happier about these two well respected physicians getting together to share research.

 

As if it couldn't get any better, Janice and Paul Toovey will be handing a cheque to Dr Werring for his UK based research on the day. Both Janice and her son, Paul have been involved with The Silent Bleed since its inception a couple of years ago but recently, Janice has developed and now manages our Silent Bleed supporters' group. A Facebook group for the family and friends of those with Superficial Siderosis, it's a confidential and safe place to chat and share concerns.

 

We can't wait. Dr Levy has been behind the question and answer Ask a Specialist section of our website for a while now and we're happy that we've recently made links with Dr Werring too. It's a collaborative effort that will bring hope, treatment and maybe even one day a cure to those with this debilitating disease. 

 

So, it seems we'll have much to report back in our next blog post. And, there's more fundraising gigs coming up - have you thought about what fun things you could get up to in order to raise some cash? Get in touch if you need some help with ideas or practical suggestions on where to start. Every penny really does count.

 

If you're new to our site and you'd like to know more about Superficial Siderosis, click here and if you'd like to get involved with fundraising, awareness or support, then we'd love to hear from you.

 

Donations are always welcome, to help us with supporting sufferers, their families and of course medical research. Make a one-off contribution using the PayPal button above or buy a set of our stylish wristbands to sell to your friends.

 

And if you have some news of your own, please get in touch and you could feature in our next update.

 

 

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Registered as a Charity in England and Wales since 2016

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