Iâve written about this recently, so forgive me if Iâm repeating myself.
The cost of previous studies is likely to be dwarfed by the work that we think is necessary for our next steps. Itâs extremely likely that we would need grant assistance. We need to make sure the details are correct so we can get the right people onboard and seek funding. If someone here does have something in the region of a million euros to fund work, some of the below becomes easier.
Itâs important that we are able to put forward a robust case to scientists. Even more important, the right scientists. Scientists of any great renown will not be looking for work. We will not be the only people asking for them to work on a project. We need to meet with them, explain why they need to take our project. Not why we need them.
Next, itâs my understanding that saying âthis is the experiment we wish you to conductâ is also not the way it works. We present the situation, explain why this will trigger an explosion of interest, they design the study. If we agree that the study is appropriate, we then arrange funding.
There are scientists who would take our money but then run an experiment based on their hunch, their preference, or field of interest. The study could be a success but the result could be irrelevant to us.
Itâs important to not only have a study take place, but that it be done by the right scientists and it be the right study.
If we get a study agreed with a scientist and their team and the funding in place, we need to be thinking about the next steps. We may need funding again, even if extremely successful. If we are not successful, we may not get funded again. It is important that any time we seek funding it is for a study which will yield good results and data.
At this point, we have not got a study in place and cannot tell you what kind of result we can hope for from the study. Our admins have recently met with scientists who they consider to be the best choice for us. With time we hope to be able to announce a project. Things have become a lot more difficult with a global pandemic taking place.
Ultimately, the time is sadly not right to run a fundraiser. Iâm sad to say that and would prefer that we were in a better position.
So, what can you at a community level do?
The same stuff that we moderators promote all the time, unfortunately. If, as Iâve said more people helped to attract people here, more people took the survey, more people took part in our other projects, we would look like a more viable funding cause. Recently the Chan Zuckerberg Initiative announced they would fund research into rare diseases. If we had more proof, a more compelling argument we may have qualified for the kind of money we need.
In terms of what we have to show, youâre correct, a forum full of various homebrew theories does not help us either get funding or to convince scientists of what we believe the scale of this problem may be and to select working with us over another equally well funded group. What would help?
We believe this is a huge public health problem but we canât prove it without the data. Fill in the survey. Prove existence of this condition. Compell anyone who has been here 3 months to take the survey.
We need more people taking the survey - tell the world this project exists through YOUR social channels. Find people on social media and ask them to take our survey.
More visibility - become part of our video project.
Genetic data - 23&me project. I donât know the status of this, @dubya_b is the person to ask about this.
Participating in all of these projects will get us closer to a desirable outcome than convincing everyone here to donate to a cause which doesnât have a design, a person to action it or a clear outcome. Though many people here will say they have the understanding of what the study needs to entail and how to do it, it needs to be something a scientist wants to do. It doesnât matter if you think you have the perfect study in mind, we need to have the scientist want to do it and for them to be of a high enough caliber to deliver the high quality results that we need.
We can ill afford to throw money and reputation away. We are trying to secure a high quality research partner and hope to announce something soon.
This is how I see things, Awor or Axolotl would be the best people to speak about this (If you search for their posts they doubtlessly have repeatedly). Please consider that this post has taken me 45 minutes to write and I have done so out of respect for you and the community.
