A way how to get money for ME research

[Tuha]

Hi,

I would like to ask you your opinion about a project which I keep in my head already for a longer time. If you like just join the discussion.

I am often thinking how to get more money for ME research. We have more possibilities (patients/ families/ friends donations, governemental money, foundations money). Like this we are now able to get maybe $10M a year for ME research which is not enough to move us further. We would probably need tens of millions of dollars but how to get it?

I think one way could be to win general public attention (till now our disease has a very small public attention. So I was thinking about a project how to change it and maybe here is a way. There are many big platforms/ groups/ sites which could be maybe interested in supporting medical research. I did a small search on internet and I found for example these groups (I am sure there will be much more similar groups who could support medical research):

- Avaaz – The world in Action (45 mil. members) – this group is supporting a lot of petitions, they often collect money for a cause and so on
https://secure.avaaz.org/en/


- I fucking love science (25 mil. members) – they write about science
https://www.facebook.com/IFeakingLoveScience/?fref=ts


http://www.iflscience.com/


- Other groups (I just would need to search more or to get some tips from you )

We could offer to these platforms/ groups a simple project which could not serve only to ME research but also to other neglected diseases. The project name could be something like „Change a course of a nasty neglected disease just with 1 USD“. So a platform would support for example once a month a disease – they would simply make a call between their members/followers to donate 1 or more USD to support research of a disease. The next month they would support another disease. The project (presentation of a disease, description of the situation, promising research areas,...) would be prepared by a disease community.If we will get money like this then each disease can have something like a conference with research teams, scientist, patients,... where we could form a cooperation and made decision how to use the money the most effective way possible.

Ok, this is just an idea, there can be a lot of modifications of this potential project. If you like just write me your input what you think about – I will be happy even about a negativ one. If you know another pltform/ group which could promote such a project just write it also here. Do you think it could work?

 

[Biarritz13]

Good but I don't think that people would give money if they are not directly connected to someone with ME/CFS.

Patients, families and friends should take advantage of globalisation for contributing to research with their own money.

We are millions...1 dollar per month isn't too much even for a sufferer.

 

[Tuha]

Good but I don't think that people would give money if they are not directly connected to someone with ME/CFS.

Patients, families and friends should take advantage of globalisation for contributing to research with their own money.

We are millions...1 dollar per month isn't too much even for a sufferer.

thanks for your reaction. Today, I think many people donate to many causes even if they are not directly connected. They have just to like the idea/ cause and often it also depends on a good marketing.
Just to make clear what I proposed here. This wouldnt be only about ME. It would be about supporting neglected diseases which dont have enough money from govenements to move their research. So the main idea would be to support the neglected diseases and then for example each month there would be a call to support financially one disease - so one month for example ME, the next month Lyme and so on. I think the topic "neglected diseases" can be interesting and catchy for the general public.

I agree that we need to focus also on patients donations. In the last years we did a lot of effort, we are improving but we are not able to get more then few millions a year and this is not enough to move ME research significantly. So that´s why I think we should focus on every posibility. If I remember correctly we have never tried to demand general public for financial support. Maybe it´s time to try it so that´s why I asked what the others think about this project.

 

[Biarritz13]

Yes they can donate but I don't think it's wise to wait for the public to make a monthly paiement for each different neglected disease (IMO).

What do you mean "we did a lot of effort"?

 

[Tuha]

Yes they can donate but I don't think it's wise to wait for the public to make a monthly paiement for each different neglected disease (IMO).

What do you mean "we did a lot of effort"?

I think it all depends how it´s solde. I think with a good marketing the topic "neglected disease" can be catchy for general public. Look for example at "Ice bucket challenge". They got 100 mil. USD. I think most of this money were from the general public with no relation to ASL.

I was involved in some fundraising campaign (OMF, Lipkin,...). For several reasons we are not able to get more than few millions a year from ME community. We worked really hard to get more but it doesnt work. Even if the last years we were able to increase patients donations - this is still not enough money to make a faster progress. Maybe someone else can try it to get more money and I cross fingers for him. This doesnt mean that to get few millions from ME community and to try to improve it - isnt worth to try. I am all for these activities. I just said that we could try also other possibilities.
Also general public is much bigger group than ME patients. I think with a fundraising campaigns we are able to reach maximum 10 - 20 000 ME patients and their relatives. The platforms which I mentioned in my first post have dozens of millions members.

 

[Tuha]

Just to tell you an example. During the big fundraising campaigns for OMF, Lipkin which took almost 1 year, there was daily work behind the scene to keep it, there was really big trafic on internet, ME forums, ME facebook to make the publicity to these campaigns - on the end there were not more than 1000 people who donated.

 

[Biarritz13]

But in order to attract donators, there is a need first to tell them what the "Group" is going to do with their money.

As you said it's all about marketing and right now marketing is digital marketing, it means that it doesn't cost that big money as it used to.

It takes a lot of organisation and work but maybe if a global ME/CFS charity operates around the world with fundraisers in each major country, it can be possible to raise some cash to do research.

A random guy raised nearly 2 millions euros for the bail out of Greece on Indiegogo, it became kind of viral. I don't see why it can't be possible for ME/CFS but it needs good strategy, good organisation, good everything...and hands!

 

[Tuha]

A random guy raised nearly 2 millions euros for the bail out of Greece on Indiegogo, it became kind of viral. I don't see why it can't be possible for ME/CFS but it needs good strategy, good organisation, good everything...and hands!

yes, that´s why I am asking for a feedback. To get more opinions is always good. I have a basic strategy in my head but I would certainly need a good marketing person who would do the campaign catchy and atractiv.

 

[Biarritz13]

yes, that´s why I am asking for a feedback. To get more opinions is always good. I have a basic strategy in my head but I would certainly need a good marketing person who would do the campaign catchy and atractiv.

Maybe it's my french side to criticise (and sorry about it) but IMO it can work better if the plan is made by the patients, not only by the people in charge.

For an example the Draco vaccine which has the potential to kill most of the herpes viruses haven't been that well received here. Of course there may be some patients who donated but globally there hasn't been an effort to donate to the Draco campaign although it is very promising for us...It's their second attempts to raise money on this platform and I hate the fact that maybe the founder won't be able to finish his job of creating and testing his vaccine...

https://www.indiegogo.com/projects/dracos-may-be-an-effective-cure-for-viral-diseases#/story

 

[Tuha]

Maybe it's my french side to criticise (and sorry about it) but IMO it can work better if the plan is made by the patients, not only by the people in charge.

For an example the Draco vaccine which has the potential to kill most of the herpes viruses haven't been that well received here. Of course there may be some patients who donated but globally there hasn't been an effort to donate to the Draco campaign although it is very promising for us...It's their second attempts to raise money on this platform and I hate the fact that maybe the founder won't be able to finish his job of creating and testing his vaccine...

https://www.indiegogo.com/projects/dracos-may-be-an-effective-cure-for-viral-diseases#/story

No need to excuse. I prefere to do something what has a chance to be successfull. I dont like to lose my limited time for unproductive things. So to get some inputs (even negative) is always usefull. And I like french stuffs - i lived there for 2 years and it was probably my best time even if I was already sick. Btw. where do you live in france?

I was thinking about the concept that if we would raise for example 20 mil. USD - it wouldnt go directly to a research team. There would be something like a conference with ME scientists, scientists who would like to research Me, foundations like OMF and patients representative to discuss the best way and the priorities how to use this money. Because the researchers are always not effective and a bit selffish (everyone works in his corner and there is not too much cooperation. More cooperation can save a lot of money and to bring us further faster. To look for an effective way to beat a disease can be more attractive and catchy also for platforms and potential donors. So if you would like to promote a disease through this project you would have to do such a cooperation.

it would be pity if draco vacccine doesnt get the money they need. Often you do a good job and marketing but you dont get enough money.

 

[Biarritz13]

No need to excuse. I prefere to do something what has a chance to be successfull. I dont like to lose my limited time for unproductive things. So to get some inputs (even negative) is always usefull. And I like french stuffs - i lived there for 2 years and it was probably my best time even if I was already sick. Btw. where do you live in france?

I was thinking about the concept that if we would raise for example 20 mil. USD - it wouldnt go directly to a research team. There would be something like a conference with ME scientists, scientists who would like to research Me, foundations like OMF and patients representative to discuss the best way and the priorities how to use this money. Because the researchers are always not effective and a bit selffish (everyone works in his corner and there is not too much cooperation. More cooperation can save a lot of money and to bring us further faster. To look for an effective way to beat a disease can be more attractive and catchy also for platforms and potential donors. So if you would like to promote a disease through this project you would have to do such a cooperation.

it would be pity if draco vacccine doesnt get the money they need. Often you do a good job and marketing but you dont get enough money.

I can tell you where I live but privately

I agree about the scientist stuff, why not like a scientific comite, inside the organisation, reviewing the proposals about what it can be done, scientifically speaking.

I don't know how to put it in good english but I was thinking about something like a "case study" or a "challenge" with a price at the end, just about ME/CFS. Give all the tools to scientists who would like to take on the challenge, during days, weeks. Scientists gathered as team rather as individual.