Thanks, Laura, Upon reflection, I understand the frustration of pwpboy; I too have written so many letters/emails suggesting/pleading/referencing new avenues of research/clinical trials to no avail. I usually do not receive a reply, or if i do it is the generic "we are unable to consider this at this time". I have given up. I no longer care if there are studies to determine if statins , SLCO1B1 mutations, and PD are related (I know they are) or if statins and having one risk allele for Gaucher's triggers a lysosomal storage disease (which has been reported for G6PD and McArdle's--though NO ONE interested in looking at the possibility of statins triggering adult onset of Gaucher's. Hello Israel!). Or perhaps it is both of these mutations coupled with taking a statin that results in PD like illness. In addition, the potential for Ibogaine's useage in PD because of its primary mechanism of increasing production of GDNF (and it's an oral drug) is ignored by every person/entity to whom I have written. I am tired; my husband's PD has progressed considerably so that caretaking consumes most of my waking hours.
I do not think it is a conspiracy to keep one chronically ill. I think scientists/physicians are not accustomed to listening to patients; they know what is best, which frequently translates to furthering the research for which they are already performing and for which they require continuing funding. In addition, I am just a patient's wife; what could I possibly know about PD?
With all the above, I still have faith in a foundation like MJFF (even if they discounted my suggestions for research) and am hopeful for 23andme (though sharing DNA data with pharma makes me angry). Gotta have hope in something at this point. Though I do understand the pwpboy's anger/frustration.