Your OMF gift tripled this week!

I wasn't going to get into this because of my energy deficits but here is my take

I would love every charity to be this transparent. I have even asked how OMF is spending and would be happy to see an accounting of the $5 million but if people feel that OMF is not where their money should go or don't want to see money tripled or think its somehow unethical or what happened at the other place is coloring their views (whether or not they want to admit it to themselves) then don't donate to OMF.

In another thread a while ago people were arguing that shysters who have lied to us and make promises they could not keep were a better investment then OMF. If people believe in that then good for you, donate to them, just don't complain you got burned again. If shysters are a good investment then those donators must think even lower of OMF

 

I have a bit of information on this that I’m happy to share as a marketing person who looks at promotional data (till point transactions) for a living including multibuys.

The first point I would like to make is that multibuys are always about creating a larger volume of sale and therefore income.

In retailing we look at how effective a promotion is by measuring 3 things (in the main)

1) did it increase overall revenue via increased spend per customer
2) did it attract new customers that weren’t shopping there before
3) did it steal money that would otherwise be spent at a competitor or from another category (say within the same store from within a different fixture)

multi-buys focus on volume of sale and are more successful on the first and third category, so in this instance taking money away from other researchers (like the Biobank) or planned donations for other good causes by existing doners and (2) hardly at all.

To be effective at (2) you would definitely not choose a multibuy mechanic since others are way more effective (loyalty based schemes and general awareness incentives etc to draw people in).

These are all well known facts that most marketing professionals (including those running OmFs publicity machine) would know...it’s not specialist information.

It’s also fairly well known that those that are less well off tend to donate more to charities than those that are well off.

So in the case of this particular campaign it is a cynical attempt to target poorer people who are already donating and asking them to donate more and divert more of their charity giving to OMF rather than anywhere else. Add to this the vulnerable nature of the target group, a dose of overpromising in their marketing comms, together with opacity in where the money is going and you have a pretty distasteful picture.

I suspect that this particular campaign will lead to less donations going to places like the Biobank or Parkinson’s research or children in need rather than introducing more people to ME research. Although a different category, People’s attitudes don’t change much when you look at parting them from their cash...most people have a limit to what they spend their money on when budgets are limited and the pool of money is limited.

By choosing a multibuy mechanic, OMF are deliberately pulling on existing customers and milking them for more as Wonko has pointed out.

I recognise this is pouring cold water on people’s enthusiasm but I would urge people to consider what results have OMF given us so far vs other researchers or charities they might choose to donate their money to? Do we need to give them more money at the moment at all until they have shown us something for past donations?

I have read the omf blurb btw and I’m still no wiser as to why they need additional funding to top up their existing funds?


As a full disclosure, I don’t have an axe to grind against the OMF, I have donated to them in the past, bought Unrest and supported various ME Action intitatives, am a signed up member of the MEA, buy my Xmas cards from ME Research and donate to the Biobank and also the additional cost of getting to Caroline to give my blood for research.

However I’m not one to get sucked into the ra ra of fund raising and just give without properly considering what use my money is going to be put to. As a marketeer I also have a few standards I like to uphold.

 

There doesn't seem to be much utility in this kind of speculation when you could ask them directly for answers.

[Edit: I understand if ppl want to continue to 'talk this out' -- this is just my opinion.]

 

So, I've been a bit confused about this... What is the distinction between donating to The Open Medicine Foundation and donating directly to The Chronic Fatigue Syndrome Research Center (CFSRC) at Stanford?

 

IIRC, Ron Davis prefers people to donate to OMF because then they can spend the money anywhere (such as by setting up the Harvard group, I assume). I thought they used to have a FAQ response on this precise issue but can't see it now.

 

A few days gone by, still a month to go and nearly half way to goal.
https://twitter.com/user/status/1055813429150343168


eta-'nearly'

 

Think there is a culture clash here in what is considered normal behaviour in charity donation.

 

This.

 

This is not unusual behaviour, nor is it unethical or illegal, its a charity soliciting donations. Many charities have shticks, from sending trinkets and asking for donations (a local hospital sends blank christmas cards with a donation request) to providing services and asking for donations (In Canada a charity called the War Amps sends key tags to everyone and if you lose your keys the tag allows anyone to put them in a mailbox and they get sent back to you with a donation request). Hell even the ice bucket challenge is a shtick.
In the end OMF wants to get money to do research to cure ME. If anyone opposes this then don't send them money. If you think someone else is a better investment send them money. If you don't want to donate to anyone or can't afford any money then don't feel obligated to donate to anyone.

I seem to recall David Tuller also having matching donations, i don't seem to remember ringing opposition then.

 

I know that my donations towards training service dogs for Veterans goes to training dogs and not birds.

 

It's very unusual in my experience in a UK context. I would say that it is a bit of a social taboo for anyone to announce how much they are donating to a charity. I'm not even sure how much my own family members donate, or even which charities they donate to, except in one instance where my opinion of a charity has been asked.

 

I don't usually post but am a long time patient and advocate. I feel like this needs to be recognized.

50 ME/CFS researchers got together to discuss their findings and OMF sponsored the event. Dr. Ron Davis made this statement at the recent Community Symposium sponsored by OMF. (my bolding)

Dr. Davis states: “A lot of progress has been made in the last year. There is a lot more data and it is now generating testable hypotheses. More exciting collaborations are being established. Excellent new people are entering the field. The future is looking even more hopeful. Our partnership with OMF has been instrumental for this progress and for the support of this symposium. We are now on the brink of even more exciting progress, but as always, funding is the rate-limiting step. Now is a crucial time to donate to accelerate the breakthroughs.”

You can see the whole summary of the event here: https://www.omf.ngo/second-annual-community-symposium-summary/

 

That isn't what i am referring to, what i was talking about is ways to convince people to donate to charities, from matching donations to celebrity endorsements to fundraising dinners there are countless organizations trying countless ways to convince people to donate money to a cause.

 

I found out why the goal is $525,000 by watching the video in the first post of this thread. Someone has pledged up to $350,000 to triple the donations made during this period (10/23-11/27). The "matching" donor adds double to whatever your donation is, so, if you donate $100, they add $200 to make it a $300 donation. The maximum amount that can be realized from this is if there is a total of $175,000 in donations. When doubled that equals the maximum match of $350,000. Then, $350,000 + $175,000 = $525,000.

If donations exceed $175,000, the total would obviously be higher, but the amount in excess of $175,000 would not be matched.

So, the "goal" is based on maximizing this "$1+$2" match. It doesn't have anything to do with the cost of some particular program.

 

I was told by an MS clinician that I might have a type of "pre-MS" before my ME diagnosis, and a few cases of "atypical MS" may actually be ME -- it's symptoms of MS without the autoantibody, so there's a decent chance. [Edit: I, too, had MS ruled out -- but before that, based on symptoms and clinical exam alone, the MS expert expected to find MS.]

Then there's the paper that shows the many, many similarities in biomarkers:

https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-205

I think a lot of people are looking at what's worked in other diseases, since there is so little known about ours.

 

@JaimeS . . . but exercise improves the quality of life for MS.

PEM is a distinctive to ME.

I had MS ruled out by a neurologist and was diagnosed with atypical ME in 1992.

 

Of course they're not the same disease. That doesn't mean that they share nothing in disease process, and it doesn't mean that a treatment useful to one might not be useful to the other.

 

https://twitter.com/user/status/1057378966170931200


As of a couple of days ago (10/30), they had raised $370,000, which means about $123,333 in donations has been tripled by the addition of $246,666 in matching funds. It also means they need about $51,666 in additional donations (to be matched with $103,333) to meet their $525,000 goal.

 

It may actually depend of what culture one comes from.
This three-for-one is exactly how also I would have done it, if I had had a million to spend.

I would think of other people's contributions as a sign that this fundraising goes to a good cause, and that my money may come to good use. Almost like a kind of cooperation between money and knowledge.


(Another thing is whether OMF is good or not. I don't even try to take a stand.
A third thing is this practice of changing the conditions. First saying "week" then "month.")

 

If you live in California, and have an adjusted gross income of over $500,000, you can easily find yourself in the 50% tax bracket (Federal & State combined). You can wind up paying half of any additional income in taxes.

However, if you donate that money to a qualified charity, it is not taxed at all.

So, say you had a spare, oh, $350,000 in income lying around in 2018. If you hold onto it, the government will take half ($175,000). However, if you donate the entire $350,000 to a qualified charity, the $175,000 you would normally pay to the government goes to the charity instead. In effect, you are controlling where your taxes go.

I don't know that this is the case here, but, if it is, I think it would be a fairly brilliant - if indirect - way of forcing the government to "contribute" ones taxes to ME/CFS research. [It no doubt becomes ever more tempting when you hit those higher tax brackets.]

So, when you donate $1, and it gets tripled, it's possible that one of those three dollars is being snatched away from the government and put towards the OMF's efforts - which I think is pretty cool.

[If some other donors are also in high tax brackets, then an even larger percentage of the $525,000 total is being redirected away from the government's general coffers to OMF.]

[Note: I'm not sure if donations from outside the US would be deductible like this in their country of origin.]