Reasons to be cheerful :): First up, I... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Reasons to be cheerful :)

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First up, I am in remission from Mal de Debarquement Syndrome (MdDS) - lucky me - and I think this remission is going to stick. I am aware that some of the FND content providers (eg Profs Stone and Staab) conceptualise all people with MdDS as having a 'conversion disorder'/'FND' or whatever they are calling it these days but as someone with lived experience of this condition over many years, who also has many friends with this condition who have shared their lived experiences too, I don't find that is a useful conceptualisation for the majority of people with MdDS.

Secondly fb tells me that the public page I created called Action for Mal de Debarquement Syndrome UK is 3 years old today. To celebrate I am recirculating the crowdfunding campaign for research into this rare condition. Getting funding to research rare conditions is always challenging, especially during a pandemic. But these awesome researchers still work around the clock for us even when they can't do trials due to Covid restrictions. Also their work on patient engagement is very good - unlike that of the FND Society - which is part of the reason there has been a very generous matched funding promise made for this campaign fairly recently.

I don't expect people here to donate (although any donations would be very welcome, of course) but the info in the crowdfunding also helps to raise awareness about MdDS so sharing helps a lot too :)

crowd.science/campaigns/res...

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Shelford24

That's great news! Long may it stay that way. Wishing you all the best with fundraising and helping others with this rare condition.

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