Open Medicine Foundation (OMF) fundraising

done and done I do not like the added 10% in fees though paid through paypal currency conversion you might think they would take the fee from the original donated sum .

 

I agree, the 10% in fees seems awfully high. If you are able to pay by check, you can avoid the fee altogether.

 

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This short video from OMF about ME is from September 2019, but I don't think it has been shared yet on the forum?

By now it has subtitles in Danish, Dutch, French, German, Hebrew, Italian, Japanese, Norwegian, Portuguese and Swedish, so may valuable in advocacy work in those countries.

https://www.youtube.com/watch?v=3vhtcbq_iX4

 

I like the short list of symptoms they chose to display. It's very consistent with my experience, except for "chronic infections" (like many, I seemingly became "flu immune" after onset).

"Unrefreshing sleep" has always seemed like a big understatement to me. What's a term for feeling worse after sleep?

 

Rapid loss of physical and cognitive stamina after minor exertion.

Leave 'fatigue' out as much as possible, please.

 

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from an email

(Europe, as opposed to EU)

 

If like me you struggle with abbreviations and acronyms OMF is Open Medicine Foundation (see https://www.omf.ngo/omf-europe/ )

 

Their home page, see https://www.omf.ngo/, says

 

Wow, that's a big minimum. I wonder how many donations of that size they will actually get, I would expect that the vast majority of donations won't qualify for 'tripling', and that probability makes me slightly uneasy about the promotion of it.

 

Curious. The U.S. donation website at https://www.omf.ngo/triple-giving-tuesday-2019/ says:

Could the minimum somehow only apply in Europe?


ETA: It's not totally clear, but it looks like the minimum may apply if you want to use something called "Gift Aid" in the UK and are donating to OMF Europe - Germany. https://www.omf.ngo/2019/11/22/donate-in-uk/

 

There doesn't normally seem to be a minimum amount that you can claim Gift Aid on.

https://www.gov.uk/donating-to-charity/gift-aid

 

Sorry but why the new franchise? It starts to look like empire building. There is never a single announcement from OMF without a donation appeal. I'm starting to feel squeemish.

I'm not trying to knock what their doing or have accomplished. Just saying how it starts to look is all.

 

US tax payers that donate to a US charity can claim that on their tax form thus reducing the taxes they pay the IRS.

Each country has different tax laws. Having a local charity may allow you to take advantage of those laws which you probably can't do if you donate to a charity registered in another country.

Another example is that OMF may now be able to register as a charity on Amazon Smile in the UK which they were not before.

 

There are those in power who would like to see pwME and other neglected communities not receive any government help, and be restricted to raising our own funds.

It is important that groups such as the OMF fund raise, and do well at this.

We have been abandoned for decades, by those who could, with a mere signature, significantly improve our lives, but they refuse to do so.

Thank goodness for the Open Medicine Foundation, the Solve ME/CFS Initiative and others who are making a difference.

In addition to the impact these groups have regarding research, and awareness, those in power who think we are sitting on our collective laurels doing nothing but whining, are sometimes brought up short when told pwME have raised millions. The proof is there.

 

The aim is to build an international collaborative research network. There will likely also be expansion into Australia. That's the only way to go. It makes a big difference for tax purposes as well. Lots of philanthropy is about tax avoidance but for that organizations have to be registered within jurisdictions. It will open up more private funding.

Normally that's something that happens through official institutions but since they are all sitting on their hands someone else has to do it. Whenever it actually happens that we get out of the dog house there will already be a significant collaborative infrastructure to build upon.

 

Well, I knew my post would get a response. I understand the tax law thing. It's just that it's not like there aren't any other groups that could be donated to in other places.

It's just my opinion but I feel that more breadth of research is good. If @rvallee 's post is correct then this collaborative could in fact mean that the various collaborative groups will have different perspectives and leads they are following which is good. It just seems like the OMF blot out the sun IMO. I hope there are a variety of points of view and not a regression to one approach is all.

Is there some other illness group for which this type of approach has shown to be fruitful?

 

I don’t disagree. However I don’t think we should be too worried, people find this or that charity appealing for various reasons and OMF seems to fit in a place of their own. They are aggressive, but they are also giving a lot of people hope and actually putting the money to good use to deliver that hope. Typically people who are reluctant to support the advocacy based organizations and so would probably not support anything if OMF didn’t exist. As an example, here in Norway many people are reluctant to have birthday donations set up for the ME Association because of the polarized public debate and all the stigma, whereas OMF can seem more neutral (and exciting, honestly).

I will still prioritize my local charity in the hopes of supporting the further growth of the research teams here, and because they have proven they only support projects that I’m happy to support. More and more people are supporting the ME Association I’m pleased to say, and I think the enthusiasm created by OMF has helped rather than hurt. Fluge and Mella are active in OMF circles but are best supported through the Norwegian MEA, for instance

However should I decide to donate to OMF like I have done occasionally, I will be very happy to have a 22% tax credit for it. It’s a win-win.