[Conductor71]

Wow! How in the world did we miss this? Once again, where are our supposed advocates?

In early October and November we missed the opportunity to be heard online as real people with a neurological disease to take part in a global, interactive, game on the Internet designed to jump start our stagnant research and treatment development community. Basically, all the stuff we say here could have been shared and possibly contributed to change in a system that is very broken.

In fact, those very words are the premise for this game. The setting of 2020 sounds all too familiar....a new, neurodegenerative diseases has been discovered. Like Parkinsons', MS, ; it has no cure. The FDA approved 21 new drugs last year, the number is the same as 1950. The new disease will emerge after 10 year period of no symptoms. The President (in the game ) is tested and has it. He makes a plea to the nation that no holds barred; what do we do to find a cure?

Okay, my question is how do we get them to hold just one more gaming session?!!?!

http://info.breakthroughstocures.org/

[indigogo]

Originally Posted by Conductor71

Wow! How in the world did we miss this? Once again, where are our supposed advocates?

In early October and November we missed the opportunity to be heard online as real people with a neurological disease to take part in a global, interactive, game on the Internet designed to jump start our stagnant research and treatment development community. Basically, all the stuff we say here could have been shared and possibly contributed to change in a system that is very broken.

In fact, those very words are the premise for this game. The setting of 1020 sounds all hek familiar....a neurodegenerative has been discovered. Like Parkins', MS, ; it has no cure. The FDA approved 21 new drugs last year,the number is the same as 1950. The new disease will emerge after 10 year period of no symptoms. The President (in the game ) is tested and has it. He makes a plea to the nation that no holds barred; what do we do to find a cure?

Okay, my question is how do we get them to hold just one more gaming session?!!?!

http://info.breakthroughstocures.org/

I asked Debi Brooks about this; she replied:

"I’ve heard of this game (we know the myelin repair folks) but I admit, I don’t know much about how it went…looks pretty cool though. And, I think this group is presenting next week at the Partnering for Cures meeting NYC so hopefully we can hear more firsthand."

[lindylanka]

It looks as though it can be used by other organisations.
Why can't an alliance of PD organizations look into this as something the enire community could participate in and learn from?


http://foresight.breakthroughstocures.org/about

Lindy

[Conductor71]

Good idea, Lindy. I hadn't even thought of something like that.

Has anyone read comments left on the blog? Interestingly, people are saying pretty much what we are..when is the last time an illness or disease was cured by someone who specialized within the discipline. It goes beyond neurology and dopamine. Of all the posts, this one caught my attention...wonder why? ;-)

Having real trial evidence to back up treatment decisions seems to be key to adoption by many. An adaptation of a something like a patients like me social community model that is passively monitored by aggregating data from health 2.o tracking systems/devices could potentially create an evidence library of real patient data that could be used to speed along treatment decisions.
Reply


Laura

[indigogo]

Laura - MJFF is working on a site that has that potential.

[Conductor71]

Originally Posted by indigogo

Laura - MJFF is working on a site that has that potential.

Carey,

I am so grateful we have you as a MJFF "insider". Honestly, they really seem to be so much that we do not know about. Any reason, they do not promote or brag about all the that they are doing. Wouldn't it be nice if they had a little section under "Living with Parkinson's" or even go as bold as highlighting us on the main page, but it would be great if they could publicly acknowledge patient advocacy and rights then just keep all abreast with the cool things they do but we only hear about though you?

a girl can dream...

Laura

[indigogo]

Laura - I think I need to do a better job reporting on what I learn as a member of the MJFF patient advisory council; they are doing so much - I think they usually don't go "public" until they've got a finished product. But that doesn't mean that it hasn't been patient tested; I've learned that their patient network extends far and deep beyond NeuroTalk and our known cadre of patient advocates (I know they consult with Greg and Ann Wasson and JeanB); this forum is an important part of that network, but it's only a part.

The good news is that it is difficult to stump them; they are in sync with patient needs; their mission remains research and finding a cure - but, as they work and progress, they are finding that it is difficult to maintain that strict border - the line between research and quality of life is too fuzzy. They are feeling their way carefully, not wanting to take on too much or in new directions until and unless it makes sense within their mission and they can meet the need in a way that is within their standard of quality. At the same time, when they do identify a need that they believe they can meet, they work quickly to do so. We are incredibly lucky we have MJFF.

[jeanb]

Thanks, Carey, but I'm not one of the advocates that MJFF is working with. I do appreciate your updates very much.
Jean

Originally Posted by indigogo

Laura - I think I need to do a better job reporting on what I learn as a member of the MJFF patient advisory council; they are doing so much - I think they usually don't go "public" until they've got a finished product. But that doesn't mean that it hasn't been patient tested; I've learned that their patient network extends far and deep beyond NeuroTalk and our known cadre of patient advocates (I know they consult with Greg and Ann Wasson and JeanB); this forum is an important part of that network, but it's only a part.

The good news is that it is difficult to stump them; they are in sync with patient needs; their mission remains research and finding a cure - but, as they work and progress, they are finding that it is difficult to maintain that strict border - the line between research and quality of life is too fuzzy. They are feeling their way carefully, not wanting to take on too much or in new directions until and unless it makes sense within their mission and they can meet the need in a way that is within their standard of quality. At the same time, when they do identify a need that they believe they can meet, they work quickly to do so. We are incredibly lucky we have MJFF.

[paula_w]

we post qustions and try to solve our own health here daily and researchers just ignore us. i don't see anyone communicating on the councils.
perhaps you are in actuality carey, a volunteer f0r mjff, and that isn't a bad thing but i thought we would be involved in discussions a nd lively debates about issues that affect us all; you are entitlted to be impressed but i see a schill for mjff, we have little detail and lots of cheerleading lol.

[indigogo]

Originally Posted by paula_w

we post qustions and try to solve our own health here daily and researchers just ignore us. i don't see anyone communicating on the councils.
perhaps you are in actuality carey, a volunteer f0r mjff, and that isn't a bad thing but i thought we would be involved in discussions a nd lively debates about issues that affect us all; you are entitlted to be impressed but i see a schill for mjff, we have little detail and lots of cheerleading lol.

Pretty harsh words, Paula.

I'm truly sorry that everyone can't have a seat at the table; some days I'm sorry I have mine because it means I have to take shots like this from friends. That's why I usually stay silent. We do have lively discussions on the council - where I try my best to represent the views found here.

But the fact is, I have little to complain about how MJFF is conducting their business on our behalf. That should come as good news here. But for some reason, when I laud what they are doing, I am perceived as a "shill," instead of a skeptic who had to be won over. Guess I just have too many stars in my eyes.