Zoom! - Cheque presentation with

Dr Michael Levy, November 2020

A presentation with a difference

​It's the year 2020. Life within the world has been thrown out of balance due to a virus called severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) however, we adapted. Previously we have very much enjoyed cheque presentations to Dr Levy for his investigative work in Superficial Siderosis to be made by those with the condition in person, however, with ‘Social distancing’ and everyone wearing face masks, a one-to-one with the Dr was not possible, so I proposed an on-line presentation which was fun as well as informative. See for yourself the presentation as well as the latest research taking place.


 

Jason Roberts

Transcript:

OUTTAKE:

 

Jason:      

Now I have something for you, I have a cheque for, let me show you that cheque, I should have taken the cheque out. We can cut this, can’t we?

START OF PRESENTATION:

Jason:

Good morning Dr Levy.

Michael:

Good morning Jason.

Jason:

(Laughs) It’s afternoon here.

It’s good to meet with you again from the time we met in London. I kinda knew it would be over the internet and the word of superficial siderosis has now been spread so wide everyone is getting to hear about it. All the doctors are getting to hear about it and I’ve just actually had someone ask for 500 leaflets to distribute to doctors which is amazing because the word is really getting out.

 

I’ve got a cheque here for £2737.95

 

Michael: 

That is very, very generous.

 

Jason: 

Hey, no problem, thank you. A lot of people have put that money in, it’s not from a couple of people. The best thing right now with the virus stopping me from getting out and doing events, right now we use Facebook. Facebook is really helping out with people nominating The Silent Bleed for their birthday and that kind of thing. So, what I’m going to do now is I’m going to put this cheque into the bank. With a little bit of luck, it should come through to you any second now.

 

Michael:    

OK let me check the bank, let me see if it’s here.

 

Jason:      

Wonderful.

 

Michael:    

And they converted the currency to US dollars. Again, this is very very generous, we’re going to deposit this into our account at Mass General Hospital, into the SS dedicated account for research in this disease to understand it better and develop new and better treatments.

 

Jason:      

May I ask what advancements have been made since our last presentation?

 

Michael:    

We are now moving forward with another clinical study in partnership with the Superficial Siderosis Research Alliance to use anti-oxidant treatments to prevent the damage that accumulates from superficial siderosis. So even while we are chelating the iron off the surface of the brain, we know that the free iron molecule is causing damage to the tissue underneath and we think this approach to using antioxidants to block that damage from occurring can complement that treatment approach so that we would use both.

This approach has been developed previously at our hospital for Parkinson’s disease so we know the protocol. It’s very easy to use 1000mg daily of a substance called Inosine to build up urate levels in the body which cross into the brain and act as the antioxidant against these free iron radicals, so this is a very simple approach that we’re doing with the SSRA and again it’s complimentary so if you’re on Ferriprox, you would remain on it but then you would also have the option to add on this antioxidant as well.

 

Jason:      

Will this be available in the UK?

 

Michael:    

I believe so, I don’t think that this is a controlled substance or a restricted compound in any way, in fact, I believe in most countries it’s not even a prescription drug. I don’t know about the UK specifically, I can check on that but I think again, this is a widely available type of compound.

 

Jason:      

That is great to hear, that is brilliant.

 

Michael:    

So, what we’re going to do is we’re going to continue to raise funds for you so that we can really tackle SS and get on top of it but these advancements that are being made sound wonderful and I’m looking forward to continuing contributing to the work. Thank you very much indeed, it’s good to see you.

 

Jason:      

Thank you again for the donation and thanks to everybody who helped to make this donation possible.

This presentation video would not have been possible without the help of the following individuals, my heartfelt thanks to you all;

 

Dr Levy and his colleges at Massachusetts General Hospital

 

Amanda Fearn – much more than a copywriter at The Silent Bleed

 

Sam Gamble for editing at Candy Apple Grove: www.candyapplegrove.co.uk

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