Indigogo in another thread, "PD Tremor is not result of dopamine loss", has written about our relationship with MJFF. I think the post makes some important points that are worth discussing in this thread. To avoid having to go back and forth, I quote the relevant section of Indigogo's post:
Originally Posted by Indigogo
I think we tend to view MJFF with some suspicion. We shouldn't. We should all be supporting them as much as we can by participating in clinical trials and raising money. We should go to their research round tables, participate in their phone calls on research topics, -- do anything we can to make them think even harder by asking the right questions. Never stop questioning.
Their motive is as pure as ours. Instead of trying to come up with a new way to a cure, we should be funneling our efforts into theirs. It is the only way to make the science faster and smarter. We don't have to be sycophants to do this, we just have to be partners, and remain as smart and independent-thinking as always. And not be foolish enough to look a gift horse in the mouth.
Let me say at the very start that I have the greatest respect fot the MJFF. But I disagree with the statement that
"Instead of trying to come up with a new way to a cure, we should be funneling our efforts into theirs."
I'm sure it wasn't meant explicitly but "cure" is not in itself the right word for what the "white rats"/ "patient researchers" or just plain researchers hope to achieve: just a 1% reduction in the symptoms of 1% of PwP would be a fantastic result.
I believe that PwP can do good research. I stress the word "DO". We have many skills from our pre-diagnosis life, we have the knowledge that we have picked up since diagnosis, we have the motivation to work hard on the problem and, and this is the most important of all, we have the intimate knowledge that comes from living 24/7 with the disease.
This is not against MJFF. For instance, I've spoken to some of MJFF's staff members on the phone about PDMeasure, my system for collecting data and running tests. Ideas went in both directions. I've offered them (and the same applies to everyone) free, no-strings use of my computer programs.
Other PwP may feel that they can contribute best in other ways: by doing advocacy work, by fund raising or by caring for others; and some may face such hardships that their fortitude is itself an example. We should be grateful to them all.