from pipeline email:

does this sound familiar?

http://www.theatlantic.com/health/ar...ors_picks=true

we are fortunate to have this happening but it makes it as much a business as a pipeline. i was glad to see the words 'urgency' in the article. our needs have become different as advanced patients tho and we don't have an advocate for pd homes or extended care.

i spoke of hearing of the earth being a giant CNS [History channel] even the universe being one. i'm just shrugging my shoulders and thinking will someone please hurry it up.

we lost our leader, bandido bob, an advocate till the end. our book has it all and we are very sad that he didn't get to see it published. he wrote all of his from a nursing home.

Paula, it sound like an appeal for non profits etc. to set up as lobbying agents, something most of them have done to some degree for ages, and nothing like urgency has emerged. Isn't this just formalizing and implementing another layer that treatments have to pass through. There will have to be a protocol, and the question is will it speed anything up?

Or should the existing structures start being more efficient? Same problems everywhere I think :-(

Lindy

[QUOTE=lindylanka;872463]Paula, it sound like an appeal for non profits etc. to set up as lobbying agents, something most of them have done to some degree for ages, and nothing like urgency has emerged. Isn't this just formalizing and implementing another layer that treatments have to pass through. There will have to be a protocol, and the question is will it speed anything up?

Or should the existing structures start being more efficient? Same problems everywhere I think :-(

Lindy[/QUOTE
i''ll bet that academics will break through and pharmas will take over the daunting task of actually producing and optimizing academic efforts.

From the article:

"This approach, combined with a scientifically-savvy, adequately empowered business development function (Booth's comments here resonate), and intensified engagement with and support of translation-focused disease foundations (a model that I fervently hope will be fruitful and multiply), could result in a promising future for big pharma, a sustainable future for the biomedical innovation ecosystem, and most importantly, a healthier future for patients."


I hate to be a broken record, but we are lucky to have MJFF playing this role for us; no one could be more savvy. It still takes time.

I was referring to them when saying we are fortunate to have this. Should have been more specific.

Thanks, Paula; I thought you were talking about the movement in general, not specifically that we are lucky to have a PD champion like the one described in the article for MS.

It's hard to know how to respond to Bob's death other than to just be sad about his death and happy that he was an advocate. The horrible truth is that maybe none of us living with a PD diagnosis today will benefit (from cure or game-changing treatment) from the work being done by advocates, MJFF, or research. You just have to have hope and keep on speaking up so people and the cause aren't forgotten. Keep pushing the envelope to make sure others keep pushing the envelope for us. It's exhausting - but Bob's life meant something.

Bob was with us for nearly three years on the book project, and didn't get to see the end of it, though he dearly wanted to. Without him to keep us in focus we would have taken different routes and our energies would have dissipated on doing too many things at once. We miss him.

The truth is that over that time we have progressed, some more, some less. PD has taken a chunk out of our ability to function that was there when we started. A dozen or so people; some have lost jobs, some have been told they are well enough to do one, when they aren't. Some have had surgery, some had falls, one had DBS. Along the way we have read, talked about, mulled over, and worked on hundreds of contributions, fitting them together to make a picture that expresses our realities and our hopes.

Thanks to Bob, this will become a reality, where once it was just a set of posts on this forum. Though he had clocked up a good 80 years it was not age that took him, he was there, himself to the end. It was PD that took him, in the ways that it can. He reported back from this personal front line battle, with great humour and wisdom. We were very lucky and privileged to know him.

This place is a good one, because there are people with a passion to do something about PD, who have been coming here for years, to keep each others passion alight.