I’m afraid we need users to be posting their experiences and many are not in a position to donate. A forum of this level is not cheap in and of itself. I explained to a fellow member in a call last night what our plans are for this and I havent shared them recently so i’ll quote it here:
I am doing my best to get all this prepared but goodness it’s a huge undertaking. I use all my operable time for this issue. Awor and I have a lot of scientists shortlisted who are not currently aware of the issue but I am desperately hoping will have the means and interest to provide practical steps for us. At that point we can present to the community, with integrated fundraising, goals, and safe foundation-administered funding, exactly what can be done. I think not only will this incentivise donations and speed things along in a practical way, but will provide a much more open experience in terms of what is happening. Also, hopefully baylor will have published by then. Keep your eyes peeled
can i make a suggestion: maybe im wrong, but i think when posting on gofundme, it’s critical to hire a professional copywriter that increase the conversion and funding. it would cost anywhere from $200-$1000 to get an effective copy.
Hey @lakehouse. To be clear, this will be on site - not on gofundme. This is related to community fundraising and realistically there is simply no way the cut is workable given the means of the community. I mentioned it to point out it will be in the style of projects on such sites, in the sense it will feature updating goal markers for feedback and clearly stated aims and objectives.
Once your paper is ready, is this something we can bring to doctors and researchers? It would be great to be able to hand them a concise and consolidated view of the science. A pamphlet if you will that we can share that spreads the word in an accurate and intelligent way.
I come from a poor family. I was a mechanic. I lost my job due this sh*t.
I will be a wedding witness at a wedding and the bride and groom know that I am sick and they have not even asked me for a gift because they know that I could not afford it. My car is 23 (1996) and worthless. He recently had a head problem and I don’t have the money to fix it. I should go to an endocrinologist, but I don’t have the money to pay for the medical examination. I thank my neighbor who lends me wi-fi to be able to surf the internet. I believe that if they recognized my disability, I would feel better, because at least I would perceive a pension and I would not be a burden for my family. If you wonder why I haven’t yet committed suicide it’s because I love my family too much and I could never make them suffer so much.
So, your idea is good, but people like me can’t pay.