Inspired Spinal Cord Injury Support Forum

paolo
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The Cure Alliance Jan 20, 2014 11:27:26 GMT -8

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Post by paolo on Jan 20, 2014 11:27:26 GMT -8

Anyone is familiar with this org.?

"Why you should join/like the Cure Alliance?

Because you need to realize that within the year 2020 you or someone you love will be diagnosed with a now incurable disease. Survival will depend on what happens between now and then ... learn what the challenges/obstacles to the development of cures are & be part of the alliance!"

www.thecurealliance.org/?p=home

I have runned into thes org few weeks ago and I like their approach, I don't really know them yet, but it seem worth digging into it.

Paolo

Lαrα Global Moderator STAFF Posts: 7,350 Post Likes Received: 3,100 Date Joined: August 2013 Injury: CES Date Injured: March 2011 Member is: Offline Send PM	The Cure Alliance Jan 20, 2014 13:08:21 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Lαrα on Jan 20, 2014 13:08:21 GMT -8 Hi paolo, ive taken a quick look at the site and what they do and it looks interesting. Im going to read in the morning properly and comment again. Thanks for sharing

DJ Administrator STAFF Posts: 8,162 Post Likes Received: 2,829 Date Joined: July 2013 Injury: C6 - ASIA B Date Injured: June 2011 Member is: Offline Send PM	The Cure Alliance Jan 20, 2014 14:51:54 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by DJ on Jan 20, 2014 14:51:54 GMT -8 Thanks for sharing paolo, it seems like a good cause. Where are they originated from?

Lαrα Global Moderator STAFF Posts: 7,350 Post Likes Received: 3,100 Date Joined: August 2013 Injury: CES Date Injured: March 2011 Member is: Offline Send PM	The Cure Alliance Jan 21, 2014 9:45:30 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Lαrα on Jan 21, 2014 9:45:30 GMT -8 Ive just taken another read paolo..i just want to clarify im understanding correctly. This alliance..will they approve research centers who will be marked as 'centers of excellence' if they work within their mission aim?

paolo
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The Cure Alliance Jan 21, 2014 9:56:45 GMT -8

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Post by paolo on Jan 21, 2014 9:56:45 GMT -8

Jan 20, 2014 14:51:54 GMT -8 DJ said:

Thanks for sharing paolo, it seems like a good cause. Where are they originated from?

I couldn't find yet where they come from exactly.Few weeks ago the president Dr. Camillo Ricordi, (Director of the Diabetes Research Institute (DRI) and the Cell Transplant Center of the University of Miami) was on TV here in Italy as he offered to investigate on a controversial stem cell therapy being offered here in Italy.
Under mission they say:

TEN GOALS OF THE CURE ALLIANCE

1. Re-set regulatory framework and requirements, from FDA to equivalent regulatory agencies worldwide, to allow for innovation and the development/delivery of cures in a timely and cost/effective manner

2. Re-set overly broad patent laws that restrict scientific discovery and inhibit collaborative work and innovation towards the development of cures

3. Establish non-profit Centers for Excellence to promote bench to bedside research and knowledge sharing, using the business model of the Diabetes Research Institute (DRI) at the University of Miami and the DRI Federation

4. Establish legal guidelines to protect academic institutions from unsustainable risks related to lawsuits for innovative, cure oriented protocols

5. Establish strict ethics reviews by institutional review boards with patient advocates for the specific disease conditions considered

6. Establish a new and trustworthy patient consent policy that allows for broader access to life-saving medical treatment

7. Establish strict data monitoring and meaningful reporting

8. Establish an international governance board with emphasis on people and improving longevity in the absence of chronic degenerative disease conditions, as core values.

9. Mandate a percentage of annual profits to be set aside by pharmaceutical companies for research to cure diseases

10. Raise public awareness of the role of life-stile and nutrition in disease prevention

I think some of these points are rilevant for a fast progress of SCI research.

Paolo

paolo Junior Member Posts: 56 Post Likes Received: 43 Date Joined: December 2013 Injury: T4/T5 Date Injured: 2004 Member is: Offline Send PM	The Cure Alliance Jan 21, 2014 9:58:25 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by paolo on Jan 21, 2014 9:58:25 GMT -8 It is also very interesting that one of the members is: Green, Barth, Chairman Miami Project to Cure Paralysis, University of Miami, Miami, FL Paolo
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paolo
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The Cure Alliance Jan 22, 2014 8:18:30 GMT -8

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Post by paolo on Jan 22, 2014 8:18:30 GMT -8

Jan 21, 2014 9:45:30 GMT -8 Lαrα said:

Ive just taken another read paolo..i just want to clarify im understanding correctly. This alliance..will they approve research centers who will be marked as 'centers of excellence' if they work within their mission aim?

That is not clear to me either..
It seems that anyone who is interested in accelerating the progress towards cures should/could join the Alliance as it may offer ways to overcome barriers (Regulatory, Institutional and legal)

Paolo

Lαrα Global Moderator STAFF Posts: 7,350 Post Likes Received: 3,100 Date Joined: August 2013 Injury: CES Date Injured: March 2011 Member is: Offline Send PM	The Cure Alliance Jan 22, 2014 14:52:43 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Lαrα on Jan 22, 2014 14:52:43 GMT -8 Mabybe one to watch and see how it unfolds paolo Looks like they are well intended.
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The Cure Alliance

Post by paolo on Jan 20, 2014 11:27:26 GMT -8

Post by Lαrα on Jan 20, 2014 13:08:21 GMT -8

Post by DJ on Jan 20, 2014 14:51:54 GMT -8

Post by Lαrα on Jan 21, 2014 9:45:30 GMT -8

Post by paolo on Jan 21, 2014 9:56:45 GMT -8

Post by paolo on Jan 21, 2014 9:58:25 GMT -8

Post by paolo on Jan 22, 2014 8:18:30 GMT -8

Post by Lαrα on Jan 22, 2014 14:52:43 GMT -8

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