Dr. Friend,

First I want to welcome you and thank you so much for reaching out to us in this way. We are unique in that we are nearly the only PD patients' group who asks the questions that all patient's need to ask. Our chief concerns are the research has been in a state of stasis for some 50 years (DBS is no innovation, imho - it just tries to make us less dependent on pills and is risky in its own right). The attitudes we seem to get are "well, you have levodopa, so what's the problem". There are so many problems, so where do we begin? I will try to highlight a few key problems and/or hurdles as I see them:

1. Over 50 years spent on what has been called the "Dopamaic view point of PD" when there it has long been knowledge that different brain areas and neurotransmitters are impacted. This view is still predominant in main stream media, but that it appears to continue as the driving force in research is appalling.

2. No unified theory on what PD is or what likely causes it. It is more likely a syndrome, yet is treated as one disease. Ironically, this seems to play out in the patient community; we have several so called patient non-profits that really do little to help bring patient, doctor, and researcher together.

3. No meta-analysis or research oversight. I was chastised for saying that if we can send people to the moon why can't we apply similar approach to eradicating disease. I would say that at this point that the scattershot method of research is a fail. If we had a dedicated team with a real mandate to solve this, we would not be in this forum right now.

The largest impediment to all this is us; I dare say. Too few of us question the status quo. The few of us who do feel overwhelmed because we face the traditional doctor and research as expert centric view of medicine in which the patient defers to them. They may know about it, but we live it.

Doctors, medical researchers, and colleges that perpetuate the notion that a degree confers a person absolute authority. To elevate the patient to partner is very threatening. This is why the ivory tower is so cut off from the reality of the patient. Our illness is treated as some esoteric, complex phenomenon that only "professionals" can grasp. It's not that we cannot grasp it cognitively, but more we are cut off by the academic and corporate control of information and data related to our condition; whatever happened to the notion of translational research?

As I see it, the problem is everyone is far too comfortable with this system for varying reasons; all self-serving. To the doctor, scientist, pharma, and FDA, we are a salary, career, prestige, and a retirement. The patient, to become an activist, must first accept that they are sick, so many just go along in denial or not wanting to take on the added stress of bucking the system.

I have said publicly more than once we need to be more vocal like the Aids activist group ACT Up, but very few people are interested in . We do not need to be quite as aggressive but we need something that gets attention. As much as I respect what Parkinson Action Network and Michael J Fox does for us, they are far too much within the system to make our voices heard.

Laura

(These are all my observations and thoughts-not speaking for all here)