Non profit medical research organizations

[Jimmy]

Greetings guys,

I recently started communicating with non- profit medical research organizations to introduce them to the subject and to request for their participation in finding a cure for this horrible disease.

I sent emails to:
-- Stowers Institute
-- Minneapolis Medical Research Foundation (MMRF)

I think it would be very beneficial if we all start spreading the word to anyone can help and might start a parallel research program.

Thanks and regards,

[Pianist]

Jimmy, it's excellent! What is required of us? This question may seem silly, because I translate English through a translator. Sorry that this is so(

[demografx]

Greetings guys,

I recently started communicating with non- profit medical research organizations to introduce them to the subject and to request for their participation in finding a cure for this horrible disease.

I sent emails to:
-- Stowers Institute
-- Minneapolis Medical Research Foundation (MMRF)

I think it would be very beneficial if we all start spreading the word to anyone can help and might start a parallel research program.

Thanks and regards,

Excellent idea!

[Colm]

Good thinking (outside the box) Jimmy.

Just had a quick look at the Stowers Institute website http://www.stowers.org/about/campus

I am amazed that there exists such a large organisation, who could also be our friend at some point, in resolving this.

I know we are all waiting and waiting for the research, but it seems potentially useful longer term, not to have all of our eggs in one basket, if there is other support.

The problem of course as always, is probably resources, unpaid time, commitment & energy and to create a virtual team to engage and work with organisations who would help us with research and to get a cure or better symptom management.

Maybe the Double D's or others might help us understand if any of these organisations would help us.

I suspect they may not, until the existing research programme concludes. 

[demografx]

Good thinking (outside the box) Jimmy.

Just had a quick look at the Stowers Institute website http://www.stowers.org/about/campus

I am amazed that there exists such a large organisation, who could also be our friend at some point, in resolving this.

I know we are all waiting and waiting for the research, but it seems potentially useful longer term, not to have all of our eggs in one basket, if there is other support.

The problem of course as always, is probably resources, unpaid time, commitment & energy and to create a virtual team to engage and work with organisations who would help us with research and to get a cure or better symptom management.

Maybe the Double D's or others might help us understand if any of these organisations would help us.

I suspect they may not, until the existing research programme concludes.

Colm, as you probably know, I've been at this  "POIS-research-search" business since 2007, and all my efforts -- and others' here  -- didn't get very far - until NORD - because of the Key Word you mentioned: resources.

I even contacted Dr Komisaruk a few years back...but didn't have any Grant to offer. And...he's got payroll to meet

But I think we now have leverage, through NORD-association as well as Rutgers' top flight neuroscience team having begun world class research on POIS for the first time.

And we did the hardest part: raising funds. From scratch.

So let's take advantage of our new level of status as many ways as we can.

This first study phase -- once the results are published -- should attract more researchers -- with funding in place! NIH, for example. But this will take time, so if we can somehow get creative and jump the curve, why not?

[Prancer]

Great ideas you guys!

[Colm]

Colm, as you probably know, I've been at this  "POIS-research-search" business since 2007, and all my efforts -- and others' here  -- didn't get very far - until NORD - because of the Key Word you mentioned: resources.

I even contacted Dr Komisaruk a few years back...but didn't have any Grant to offer. And...he's got payroll to meet

But I think we now have leverage, through NORD-association as well as Rutgers' top flight neuroscience team having begun world class research on POIS for the first time.

And we did the hardest part: raising funds. From scratch.

So let's take advantage of our new level of status as many ways as we can.

This first study phase -- once the results are published -- should attract more researchers -- with funding in place! NIH, for example. But this will take time, so if we can somehow get creative and jump the curve, why not?

Thanks Demo, and although it happened before many of us found this forum, fair play to the heroes who were involved since 2007, and THE pioneering work, the NORD funding activity - as shown in this and surrounding forum pages - worth a re-read (wish I'd been a part as it must have been exciting back then to see commitment and it all unfold back in 2011) http://poiscenter.com/forums/index.php?topic=125.105

[demografx]

I clicked on the link, Colm, and was transported back to The Pioneering/Grand Struggle days!

Thanks for the memories!