This is a request for your suggestions to improve/amend CurePSP’s research plan, which is now two years old.
Here’s a link to the first and current version of our Research Roadmap: Roadmap for Symposium 2013. You can also find it here.
It was designed as a guide to grant applicants and donors who want to know what CurePSP is interested in funding. That’s not to say that we wouldn’t fund other things, but proposals that fit into the Roadmap’s model are viewed more favorably in our grant review process.
The elevator explanation of the model is that it uses unbiased gene searches to identify new risk genes, then finds drug targets among the proteins in the related gene products or cellular pathways, then tests those drugs in lab models, then turns to Pharma to develop those drugs clinically. Along the way, it calls for new models and new clinical markers to assist in the process.
Clearly, The Roadmap ignores important things such as symptomatic treatments, toxic etiologies, clinical characterization, epidemiology and neurophysiologic analysis, not to mention serendipitous neuroprotective treatments with unclear mechanism. But it provides a focus and an orientation.
So please use the Comments function to leave me your suggestions for improvement. Keep in mind that the Roadmap should remain relatively simple and generic. We don’t want to direct research from the top down. On the other hand, we don’t want the document to be so generic as to be useless.
Obviously, feel free to respond to others’ comments; and have fun!
PSP Blog 
As a close relative of a PSP patient, I am an avid reader of everything I can find on this illness and I am a member of several boards where patients and relatives can post their emotions and experiences. As a result I came across some interesting observations resulting from some patients testing anything in the hope of getting some reliefs to their suffering.
As a very experienced manager of research (now retires and in a completely different field) I came to the conclusion that innovation often comes (or are just triggered) by simple observations made by people with very little or no expertise at all in the field. I feel that these boards could be better exploited by just going through the various testimonies and checking if some of the positive observations make any sense. They could be used also to create a big database on all PSP patients organised to permit a statistical analysis of the information collected. It would not be a costly project but could lead to surprising results.
I would be very happy to discuss this matter in more detail and give actual exemples of potentially useful information.