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Wow! And thank you all!I spent a whole year organising the crowd fund for this study, with a team of excellent people
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Wow! And thank you all!I spent a whole year organising the crowd fund for this study, with a team of excellent people
I donated to this and ron davis project but i was thinking... is it a good idea for us to partly fund lots of different studies that require massive amounts of money, what if none of them receive full funding? will the donations be wasted?
Would it not be better to put all our donations into fully funding one of them?
Many thanks to the whole research team and also to the crowdfunding team. I've donated and wish them the best. Any chance of an updated amount raised so far like an earlier crowdfunding effort? Love to know how we're doing along the way.
All the best.
I think that it´s important to show our support by donating money to Lipkin and Davis. Maybe even more to Lipkin because Davis is personally involved in this disease by his son. So I wouldn´t put all our money just on one researcher.
I think patients should be able to fund Lipkin and Davis. I dont know how it´s with Lipkin but Davis already got attention of some big donors so it should go faster. Now if I remember correctly I think Lipkin got also a million dollar donation the last year after his chilli challange. Often the big donors arrive after seeing many small donations. Also we should try to think how to do a better publicity about these studies. Davis got a lot of trafic on internet and I think it helped a lot.
We are a big community but there is still not too many patients who are donating. I know that for example for Davis fundraising campaign which got on the end some millions - there were only few hundred patients who donated.
I wish the NIH would fund this study, but they didn't even give enough to cover sample collection, so for now it's down to patients to make this happen.
Hi Tuha,
Just wanted to clear something up.
The fact that Professor Davis's son Whitney has this disease does not mean that he and OMF need funds any less than Lipkin, quite the contrary. Im not sure why you would think that. I feel it is important to point that out.
B
I am not an expert, but I know the hope is that the NIH will come to the party in some way.
The difficulty, I think, is that it's the amount that will be available and when, and even that is not guaranteed. Even if the NIH do a 10 Million RFA shortly, basically Davis and Lipkin's groups need that amount between them and they needed it yesterday. The grants that do get awarded are often stretched out over time as well and shared around groups of researchers and specific need areas, that way they can fund many things - but over time. I think I have that correct but wouldn't mind if @viggster or @Simon or others may correct me or add to this. For example, X researcher was awarded 3.5 million over 5 years to look at XXXX.
There are other needs that also are essential like seeding new researchers into the field, funding other great researchers, as well as the need for clinical centre of excellence development among other things that are not coming to mind right now. So things could be slowed down considerably and exponentially when funds are shared around.
We need this type of research from these two groups for hypothesis generation as well as solidifying stronger findings, so it's basically urgent. Fingers crossed for bigger RFAs, but they have not materialised yet and if they do we are still at risk of going very slowly. I don't think anyone is keen for this work by these two groups to take 5 years and then add in publishing time.
The irony is that if they are funded they will seed hypothesis that many researchers can work on including themselves, also the more support is shown to these groups by the community - the more likely NIH feel the pressure to help them as well. I think this is another reason for the community to roar for them, both in advocacy to get them funded by NIH, and for donating to ourselves - donations from thousands of individuals is an act of advocacy in itself.
Tuha highlighted above an approx. amount of donations received for OMF. I would like to highlight that the Microbe Discovery Project, in the first initial crowdfund the amount of donations was approx. 1350 donations, in saying that I would also like to highlight that the main thread that kicked off the crowdfund got well over 50,000 views in a very short time frame.
Sure not everyone can donate, you wouldn't want people to donate if things are that bad for them, but sharing and vocally supporting can be done if well enough and that is the thing that is hard to get people to do - along with donating. Thousands can and don't. I think we need to voice how important it is to invest in research collectively, but in a way that doesn't make people feel bad if they can't. I know one donor for MDP saved up 5$ a week for 4 weeks to donate $20 dollars and that persons donation is so valuable.
You don't want people breaking the bank, you just want to reach enough people, get them to care enough to donate something, if you can get thousands to understand that it can be done collectively and it makes a difference - we can shift this. The majority of the community has to get behind the efforts.
There are many sentiments on this thread that I agree with regarding fundraising especially some from AB, Tom Kindlon and Gerald T. I hope people out there read them.
Linda Tannenbaum = Legend!
Sure not everyone can donate, you wouldn't want people to donate if things are that bad for them, but sharing and vocally supporting can be done if well enough
The irony is that if they are funded they will seed hypothesis that many researchers can work on including themselves, also the more support is shown to these groups by the community - the more likely NIH feel the pressure to help them as well. I think this is another reason for the community to roar for them, both in advocacy to get them funded by NIH, and for donating to ourselves - donations from thousands of individuals is an act of advocacy in itself.
If I were you, I would just set one up. I doubt the moderators would reject.Wondering if it would be helpful to have a thread solely for posting that we have just made a donation to a research project. This could remind us all if we are able, to make a donation. Like others I think we have to move research along ourselves until we get something significant in the findings - enough to get the big dollars from government.
I thought one thread could be for posting that we have made a donation to a research study. I know I will be giving to more than one researcher. Just a thought. It would be encouraging to see all the donations being made.
Wondering if it would be helpful to have a thread solely for posting that we have just made a donation to a research project. This could remind us all if we are able, to make a donation. Like others I think we have to move research along ourselves until we get something significant in the findings - enough to get the big dollars from government.
I thought one thread could be for posting that we have made a donation to a research study. I know I will be giving to more than one researcher. Just a thought. It would be encouraging to see all the donations being made.
I don't know the answer to inspiring sufferers to donate except that I know for myself that donating is one thing that I can do and am inspired to do because it's the quickest ticket to answers and treatment that I can see. We could spare years of extra suffering if we really push and give to research as each of our circumstances allow.It would also be helpful to be inspired by fundraising efforts, from grassroot to bigger campaigns. I know fundraising is more developped in the UK. What can we do, within our constraints?
Hey @rosie26 I don't think the problem is the patients not donating. I think the majority of patients are impoverished by years if not decades of being unable to earn money and getting meager government assistance.I don't know the answer to inspiring sufferers to donate except that I know for myself that donating is one thing that I can do and am inspired to do because it's the quickest ticket to answers and treatment that I can see. We could spare years of extra suffering if we really push and give to research as each of our circumstances allow.
We fundraise the best way we can, if we can, where we can. We support those who can get things started if we can. We support those with good ideas for fundraising if we can.Hey @rosie26 I don't think the problem is the patients not donating. I think the majority of patients are impoverished by years if not decades of being unable to earn money and getting meager government assistance.
My question was more " how do sick patients fundraise" (through bake sale or any other kind of creative outlet, or through organizing fundraising events) when the patients are sick to start with and their family members not exactly supportive that way?