NGO for research

[Martin aka paused||M.E.]

Folks,

I have a request for the community:

I have prepared everything for an NGO that will raise money for research. We are a team of qualified members (everyone does on the NGO what he does for a living and I only picked those who are highly qualified, meaning they work for big companies).

We have contacts to very prominent people in Germany (well-known football players from the national team, musicians, TV presenters ...) through my previous work as a celebrity lawyer.

Now, since I want to collect donations not only nationally but internationally, I would like to ask you whether any of you have contact with famous or rich personalities in a country who could possibly support this project. ME experts and other doctors are also welcome.

It would also be nice if we had a lawyer in every country in which we are going to start targeted fundraising campaigns (e.g. USA, UK, Spain, France) so that we do not violate national law there.

That sounds utopian to many, but we have already planned and organized most of the things here in Germany.

Before we go public, I would like to have everything prepared so that we can present it professionally on our website and social media accounts.

Thank you!

 

[GlassCannonLife]

Folks,

I have a request for the community:

I have prepared everything for an NGO that will raise money for research. We are a team of qualified members (everyone does on the NGO what he does for a living and I only picked those who are highly qualified, meaning they work for big companies).

We have contacts to very prominent people in Germany (well-known football players from the national team, musicians, TV presenters ...) through my previous work as a celebrity lawyer.

Now, since I want to collect donations not only nationally but internationally, I would like to ask you whether any of you have contact with famous or rich personalities in a country who could possibly support this project. ME experts and other doctors are also welcome.

It would also be nice if we had a lawyer in every country in which we are going to start targeted fundraising campaigns (e.g. USA, UK, Spain, France) so that we do not violate national law there.

That sounds utopian to many, but we have already planned and organized most of the things here in Germany.

Before we go public, I would like to have everything prepared so that we can present it professionally on our website and social media accounts.

Thank you!

Sounds good! I assume the aim is to further research and trial treatments etc? Happy to wait until your public release if you can't share any details though.

Unfortunately I don't have any contacts that are useful, but I can potentially reach out to Professor Marshall-Gradinsik with some information about it. She is based at the Gold Coast (south Brisbane). What would you want from such people? Happy to PM about this if you prefer.

 

[SNT Gatchaman]

Thank you Martin. I'll DM you later today..

 

[Martin aka paused||M.E.]

Sounds good! I assume the aim is to further research and trial treatments etc? Happy to wait until your public release if you can't share any details though.

Unfortunately I don't have any contacts that are useful, but I can potentially reach out to Professor Marshall-Gradinsik with some information about it. She is based at the Gold Coast (south Brisbane). What would you want from such people? Happy to PM about this if you prefer.

On the one hand I need famous people as ambassadors. It's important bc we know from the science of marketing that it increases the willingness to l buy a certain product. We want to extrapolate the same to donations.

One of my former clients did exactly that: she moderated the so-called “Krebsspenden Gala” (cancer donation gala) for a long time in Germany. That was not only more than successful in terms of audience ratings, but also in terms of the donations that were collected.

In addition, these people are extremely well networked in business. I'll call her the days to discuss everything.

Second, we need doctors who can examine applications for funding from a knowledge-based point of view. In addition, a medical advisory board in an NGO in the healthcare sector increases the credebility

 

[5vforest]

Hi Martin,

Roughly what sized donors are you targeting? I might have some people in mind. Feel free to PM if that's better.

 

[godlovesatrier]

I used to be fairly well connected before my ME hit. Not a-list but they were still well off people. At any rate I hope your able to find all the help you need.

 

[Martin aka paused||M.E.]

Hi Martin,

Roughly what sized donors are you targeting? I might have some people in mind. Feel free to PM if that's better.

Doesn't matter. The goal is to all in all get enough money to support promising research or even start research with my friends in science.

 

[5vforest]

It might help if you could share a short mission statement, maybe how you see your org contributing to the research landscape in a manner that is currently left unfilled? Not that I wouldn’t donate based on your reputation alone

 

[Martin aka paused||M.E.]

We think that the current NGOs in the sector of ME are missing one thing to collect sufficient money to fund big studies and that is marketing.

We have specialists here from big companies who lead marketing departments, especially one lady who is head of online marketing of a big international company will be involved in our own online marketing.

The second thing is awareness. It's incredibly hard to cut through the noise especially on social media if you don't have a big amount of money. We don't want to spend high amounts of money on that just like the other ME NGOs. But we have another factor: popularity. As I worked in the entertainment industry as a lawyer a have made friends with very popular people in Germany. Furthermore, the law company I worked for is also in our NGO. That means that we have the best contacts with celebrities and also on television. We want to use that popularity to strengthen our brand and to raise awareness of how brutal this disease is.

The third thing is that we think that some very promising projects lack big amounts of money. We want to fund them.

As soon as our webpage is online and the court has given us the go to collect money I will let you all know so that you can learn more about who is behind the scene and what is the mission.

 

[elvira]

The work you put in to this while having so little energy, it is so inspiring and gives me so much hope. Thank you with all my heart🙏♥️

 

[Consul]

There are celebs in every country that has or have had this disease, they could be useful as ambassadors. Would it be useful if members on this forum provided you with names of me-sick celebs for potential future recruitment or are you only looking for direct ways to get in touch with anyone concidered a celeb/rich person?

 

[Martin aka paused||M.E.]

There are celebs in every country that has or have had this disease, they could be useful as ambassadors. Would it be useful if members on this forum provided you with names of me-sick celebs for potential future recruitment or are you only looking for direct ways to get in touch with anyone concidered a celeb/rich person?

You certainly can if I can't google them?!?

 

[Consul]

You certainly can if I can't google them?!?

Sure, i have provided some news articles in a direct message, i prefer to not put them directly into the forum.

 

[jaybee00]

Thanks for this--excellent to see a funding raising effort!

I think the effort should be on fund-raising for EXISTING NGO's like OMF and not on making a new NGO with its own research priorities.

The third thing is that we think that some very promising projects lack big amounts of money. We want to fund them.

What if your research reviewers reject the projects that you want to fund. For example, on this forum there are endless threads from people who believe their symptoms are due to "viruses". Viruses may have gotten them into ME/CFS, but there is no evidence that ongoing "viruses" are causing symptoms for long-term ME/CFS patients. For example, AP goes around saying that ME/CFS is due to various viruses/persistent pathogens, but she has no data and hasn't collected any data.

Second, we need doctors who can examine applications for funding from a knowledge-based point of view. In addition, a medical advisory board in an NGO in the healthcare sector increases the credebility

So if you have a research review board, then you should be prepared to have the proposals that YOU personally think are very promising be rejected.

Again, my own preference would be to have your fundraising effort fund existing NGO's (most specifically OMF), rather than create your own NGO with its own research focus, as this will eat up a lot of your funding (creating the infra-structure) and time.

 

[Rufous McKinney]

You certainly can if I can't google them?!?

maybe some body who is a celebrity that YOU already know, might know how to reach another celebrity in a different country...

when I tried to look into this here, I found that AGENTS/managers exist and they seem to keep the public AWAY FROM any form of direct contact with The Celebrity in Question.

 

[Rufous McKinney]

Again, my own preference would be to have your fundraising effort fund existing NGO's (most specifically OMF), rather than create your own NGO with its own research focus, as this will eat up a lot of your funding (creating the infra-structure) and time.

the Idea Martin is moving forward with sounds like a very good one at least for the German folks....who aren't getting much direct benefit from any of the NGOS much, currently (Dr. Prusty- a lot of patients helped fund him thru HHV-6 Foundation...who simply collected the funds).

 

[Consul]

Oh i misunderstood Martins post. Of course you can google for the celebs yourself! I was wondering if it would benefit you that other people did it but its probably not that big of a task. I was thinking that if e.g someone was living in Singapore or China then you might not understand the language.

 

[andyguitar]

That sounds utopian to many, but we have already planned and organized most of the things here in Germany.

I dont think it sound utopian @Martin aka paused||M.E. and I'd support your efforts in starting something new. Dont know any celebs..... apart from you!

 

[Rufous McKinney]

I'm one degree seperated from major Hollywood, but the person is involved in a practice/ belief system that includes illness is an illusion.

so I"m unclear how I"d approach the subject.

 

[Martin aka paused||M.E.]

I think the effort should be on fund-raising for EXISTING NGO's like OMF and not on making a new NGO with its own research priorities.

We will fund foundations as well. The rest is your view, but not mine.

What if your research reviewers reject the projects that you want to fund. For example, on this forum there are endless threads from people who believe their symptoms are due to "viruses".

The medical board is not part of the decision-making board of directions.

Again, my own preference would be to have your fundraising effort fund existing NGO's (most specifically OMF), rather than create your own NGO with its own research focus, as this will eat up a lot of your funding (creating the infra-structure) and time.

I did so in the past. You are free to support them. There is not much infrastructure needed.