I should have asked this as part of my previous question. A lot of money has been raised for trial studies. From what I have read, many are never completed because they do not have enough volunteers or because people drop out.
This is just a thought, again, based on personal experience. I believe many do not volunteer for trial studies because they do not have transportation to go where the study is being done and also, there is so much upheaval in their lives that they just cannot participate in a study.
I would like to see a foundation that gave "grants" to newly diagnosed folks who are in the same situation that many of us find ourselves. A foundation that would bridge the financial gap between the time of diagnosis or inability to work until disability is approved. In my own case, I know that my financial situation significantly affects my symptoms.
I also cannot access medical care because I cannot afford to see the doctors or have test run.
Maybe something like this is already out there and I just do not know about it. If you have knowledge of such, please share.