Paula, Frustration with a degree of hopelessness has been in your postings on this subject. It is obvious you have devoted much time, intense energy, penetrating thought and effort into affecting a change in how PD research is performed. I for one thank you for your efforts on my husband's behalf. I frequently feel I am such a slacker for not contributing more; your efforts, along with several other members of this form are reassurring that the need is being examined and expressed.
It is obvious that the traditional medical research model for Parkinson's disease is not effective enough. The thread concerning the most recent drug failure and questions involving "subsets" of PD patients who were helped by the drug are illustrative of how little Parkinson's disease is understood. Thru further analysis of the "subset" who were helped, what differs among PD patients to make one responsive to a drug like spheramine while another receives no benefit could potentitally help elucidate different types of PD and different causes or triggers. But the trial was Pharmaceutical sponsored and driven. Their goals have nothing to do with elucidation of disease differences if it means only a small subset will benefit. If the results do not indicate large numbers can be given and sold the drug, then the research (ie the $$) stops. Is the answer a return to government sponsored academic based research? That model was fraught with problems also, demonstrated by favoritism, and the superiority of the ability to bestow "name making" to academics (and all that implies). I have no corrective answer, except including patients into the process from beginning to end--where questions about further analysis of subsets of patients, the possibility of inclusion of "compassionate use" in the patient contracts , along with other patient observations/suggestions are acceptable.
Paula, I recognize the significance of your efforts, and thank you for so (mostly--like most of us) graciously sharing your enviable talents. Madelyn