John, thanks for posting this. Soania is a friend of mine and is by far one of the most inspirational person with Parkinson's that I know. She was diagnosed at age 27, yet has still be able to obtain her license and
practice medicine for 12 years, raise a family, write books and dozens of articles and become one of the most active advocates for the PD community in the world. I highly suggest everyone read some of her many writings. Her website for Designing a Cure:
Designing A Cure for Parkinson's Disease

With regard to your other comments, I do agree. However, change is happening, albeit it may be slow. Patient involvement in the research process is improving. Clinical trials funded by MJFF and CPT require the trial steering committees to have patient representatives. Safety review boards (SRBs) are now including patient representatives as part of the group. Many journals now include patient reviewers (I am a reviewer for the British Medical Journal which has changed policies). PCORI will only fund research that has active patient involvement and then patient reviewers at completion. Many pharmaceutical companies are now including patients as part of their research steering committees for both pre-clinical studies as well as there ongoing and post trial reviews. In fact, Soania and I are on the same patient advisory council, along with about 10 other patients, for a biotech company that specializes in neurological drug research.

My point is that change is happening. What we would all like to see is it happen faster. For that, we need more patient involvement putting more pressure in the places we want to see changes made. For instance, I will not donate funds to any PD organization that supports research unless they require the grant recipients to include patients on the trial team. Patients are basically like minority groups and we need to actively fight for our rights. It's the only way change past practices that allow us to be seen but not heard.

Anyone on this board who would like to become more active in the research process, whether it be on an advisory council, trial steering committee, research reviewer, etc., can contact me. I would be happy to give you more information on how you can do this.

Gary