MEAction: The NIH responds to #MEAction, next steps

[Sasha]

Sure the charities can award grants and encourage new recruits, but that is already being done. The key there is just raising enough money to get serious projects under way.

I've been thinking about this a lot lately. I think that one of the problems is that none of the charities have a track record of large projects. IiMER managed to raise a lot of money (albeit slowly, in comparison to other disease fields) for a rituximab trial but the trial (rightly) isn't going ahead. I think another large project to donate to specifically is needed to enthuse donors but none is on offer in the UK. It seems a bit of a chicken-and-egg scenario; people won't donate until they see a big project, and a big project is perhaps unlikely to be mooted without a lot of money already sloshing about.

Meanwhile, we have a lot of small charities rather than one big one and that means that research donations get split amongst them rather than pooled, which limits what they can do. I wish they would amalgamate, but that seems unlikely, given their internal politics.

 

[Dolphin]

Meanwhile, we have a lot of small charities rather than one big one and that means that research donations get split amongst them rather than pooled, which limits what they can do. I wish they would amalgamate, but that seems unlikely, given their internal politics.

Though three charities did work together on the biobank.

It can be an advantage to have more than one: people can get annoyed by particular decisions a charity makes and then not feel inclined to donate or fundraise for them. With more charities, hopefully most people will have at least one charity they are happy to donate to or fundraise for.