Beware the Rats

[reverett123]

I hope the snow has spared you a little bit.

Originally Posted by Bob Dawson

I don't have spare bedrooms but if anybody is coming in a camping trailer I have 75 acres to park it on. 40 miles south of Montreal, 8 miles north of the State of New York.

[indigogo]

Originally Posted by Conductor71

To piggyback on Soccertese's ALS info, MS patients have also designed and funded their own clinical trial. Even more, they a patient led research group founded by a guy with MS who was fed up with the lack of progress in traditional research. This is ultimately what we need.

I have thought about Andy Grove and Sergey Brin, why don't they start something like this? We could have a dream team of the best. I don't get why they just work within the system when they do not need to.

Laura

We have a guy - Michael J Fox, and both Andy Grove and Sergey Brin invest heavily in MJFF. They are regular advisers to the foundation, and Sergey's mom, Genia (who has PD) is on the Patient Council.

Grove and Brin give their money to Fox because they know it is our best hope for a cure. And they are not frivolous with their finances.

[Bob Dawson]

Originally Posted by reverett123

I hope the snow has spared you a little bit.

We only got two feet of snow; other places got 3.
The 70 m.p.h. wind was not good. Blowing snow, zero visibility. It has been colder than minus 20 most nights since Christmas.
Global warming - please. We need it now.

[johnt]

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.

John

[indigogo]

jphnt -

Couple of things. One, it is most excellent that MJFF staff are communicating with you. That's the goal - getting patients access to power.

Two: this is just a highly personal point of view, but I find research on alleviating symptoms without such research being embedded in the larger picture of disease modification to be useless. Right now, MJFF is doing a lot of research towards dyskinesia control, something of great use to patients. But I think the real goal should be stopping the dyskinesia before it starts; that is, getting a better handle on the disease process itself. It is one area where I have a somewhat divergent view from the foundation. Perhaps it is a result of my initial PD dx 14 years ago. My doctor told me there was medication to stop my tremor - before I was told it was PD. I have always thought that backward and strange, and believe it is why PD research has stagnated for 50 years. Now, instead of going right to the heart of the matter, we are forced through no fault of our own, to put valuable research dollars into fixing problems that are medication side effects because for years, prescribing sinemet was the easy way out. I am determined to hold the research establishment to a higher standard. MJFF knows that; I can forgive them for helping dyskinetic patients because I know they understand it really is just a symptom of a larger problem. It is not distracting them from the ultimate goal.

I think patient input in all aspects of the research process is crucial. I think MJFF is the only patient led PD research organization, and I believe they are our champion. Patients should never let up. I know it is a slogan, but it is a good one - the answer lies in all of us.