Christopher and Dana Reeve Paralysis Act

[paolocipolla]

Originally Posted by IMHopeful

The Paralysis Resource Center received an additional $2M last year as a result of the CDRPA being signed into law. This brought the center's 2010 budget to $7,748,000.

Paralysis Resource Center (+$2.0 million) The FY 2010 request includes $7,748,000 for Paralysis Resource Center (Christopher and Dana Reeve Foundation) an increase of $2,021,000 over the FY 2009 Omnibus. The funding increase will be used to expand and implement activities related to the recently enacted Christopher and Dana Reeves Paralysis Act, such as the expansion of the disability and health state program activities to address the needs of people with paralysis and other physical disabilities.

http://www.cdccoalition.org/pdf/FY2010_CDC_CJ_Final.pdf

No - Thing for regenerative research.

CDRF has screwed up the whole CDR paralysis act. Time to say that loud all around the world.

Who is to blame? Their scientific advisory board first, in my opinion.

Paolo

[IMHopeful]

I think someone was putting together an overview of organizations/foundations related to SCI. If that is still in the works, this is a good tool for finding the facts about various charities.

http://www.charitynavigator.org/inde...ary&orgid=5066

[cheesecake]

Originally Posted by IMHopeful

The Paralysis Resource Center received an additional $2M last year as a result of the CDRPA being signed into law. This brought the center's 2010 budget to $7,748,000.

Paralysis Resource Center (+$2.0 million) The FY 2010 request includes $7,748,000 for Paralysis Resource Center (Christopher and Dana Reeve Foundation) an increase of $2,021,000 over the FY 2009 Omnibus. The funding increase will be used to expand and implement activities related to the recently enacted Christopher and Dana Reeves Paralysis Act, such as the expansion of the disability and health state program activities to address the needs of people with paralysis and other physical disabilities.

http://www.cdccoalition.org/pdf/FY2010_CDC_CJ_Final.pdf

Yes and if you take a look at the allocation it was used on NRN as well as a NIH push for funding. The increase in dollars for the PRC has been consistant over the last 9 years.

CDRF is split between public monies (CDC for PRC) and private monies. The PRC has always been funded by public monies.

[cheesecake]

Originally Posted by Chaz19

Has anything changed? Does anyone know if the Reeve foundation is lobbying for funds?

Yes, it is currently on going.

[Chaz19]

Originally Posted by cheesecake

Yes, it is currently on going.

"The bill is divided into four parts: Title I--Paralysis Research--establishes research consortia modeled after CRPF's program, only on a larger scale, utilizing the National Institutes of Health. Title II--Paralysis Rehabilitation and Care--establishes a clinical trials network to design and gather data on rehabilitation protocols. It is intended to make the case for funding by Medicare/Medicaid and the insurance industry for the latest rehabilitation practices. "

Title III--Quality of Life--develops programs and services to advance quality of life for persons with paralysis and other physical disabilities and provides grants to nonprofit organizations. Title IV establishes paralysis research, education and clinical care centers and consortia within the Department of Veterans Affairs.

While the bill seeks $300 million and focuses on paralysis, Brooks believes that Reeve's decade-long advocacy of research will benefit the disability community as a whole. "I mean, he was a strong advocate for all research moving forward," she says. "He believed the higher the water was, the more all the boats would float. We are hoping that will be the lasting legacy."

Source: http://www.newmobility.com/articleVi...le%20Sclerosis

Can you share any more details? Is there any research that is currently being funded?

[Chaz19]

Originally Posted by paolocipolla

No - Thing for regenerative research.

CDRF has screwed up the whole CDR paralysis act. Time to say that loud all around the world.

Who is to blame? Their scientific advisory board first, in my opinion.

Paolo

Paolo, I'm really frustrated. So many of us spent our time, money and effort pushing for a bill we thought would help further research. I feel that we have been let down. A year in a half later and still nothing.

When people ask me if the bill my friends and family lobbied for is helping fund any trials, I have no response. The omission of information from the foundation is saddening. I too have written directly and have been given pedestrian responses. I really want to believe they are continuing Chris's legacy, I hope my cynicism is founded in ignorance.

[keeping on]

Chaz, the foundation is what it is now that Reeves is out of th epicture. It along with the Mialmi project are providing jobs and careers for peoplr who have no idea. I told the fourm , I spoke wiht a guy at Reeves foundation adn he replied it has only been 30 years. there is no sense of urgency for a cure. Rather, they want peopel to climb mountains in wheelchairs. Unfortunately we as a group should use our influence as a group to at least point this --it out. this is why we need Wise's therpies to be funded and done to put these people to rest.

keeping on

[Leif]

Originally Posted by keeping on

Chaz, the foundation is what it is now that Reeves is out of th epicture. It along with the Mialmi project are providing jobs and careers for peoplr who have no idea. I told the fourm , I spoke wiht a guy at Reeves foundation adn he replied it has only been 30 years. there is no sense of urgency for a cure. Rather, they want peopel to climb mountains in wheelchairs. Unfortunately we as a group should use our influence as a group to at least point this --it out. this is why we need Wise's therpies to be funded and done to put these people to rest.

keeping on

MP in fact started much of this, cures. C(D)RF too. Show wath you doooooooo...

[Chaz19]

Originally Posted by keeping on

Chaz, the foundation is what it is now that Reeves is out of th epicture. It along with the Mialmi project are providing jobs and careers for peoplr who have no idea. I told the fourm , I spoke wiht a guy at Reeves foundation adn he replied it has only been 30 years. there is no sense of urgency for a cure. Rather, they want peopel to climb mountains in wheelchairs. Unfortunately we as a group should use our influence as a group to at least point this --it out. this is why we need Wise's therpies to be funded and done to put these people to rest.

keeping on

My frustration stems more from the lack of outreach and information provided from the CDRPF. I was hoping that they would unite our community by providing continual updates on the bill's progress and what/how the funds are being allocated for and towards and WHAT WE CAN DO TO HELP THEM.

From what I recall, we were hoping for $300 million over the course of three years, which is a drop in the bucket. So $2 million to the Paralysis Resource Center isn't a whole lot of dough, but what else is going on??

[GRAMMY]

Originally Posted by Chaz19

My frustration stems more from the lack of outreach and information provided from the CDRPF. I was hoping that they would unite our community by providing continual updates on the bill's progress and what/how the funds are being allocated for and towards and WHAT WE CAN DO TO HELP THEM.

From what I recall, we were hoping for $300 million over the course of three years, which is a drop in the bucket. So $2 million to the Paralysis Resource Center isn't a whole lot of dough, but what else is going on??

Look at their charity rating. They only ranked at 37.5%...A 1 STAR rate!!
At least in 2007 (46.20%) and 2008 (45.36) they had a 2 star rate.
Shoot, the CEO salary in 2009 was ($287,204.00)

http://www.charitynavigator.org/inde...ary&orgid=5066

Perhaps they are needing to make some big huge changes there! OUCH!!! Now it's no wonder Sam Maddox (the CDRF paid blogger) was sniping and snarking last month about carecure members funding Dr. Stephen Davies lab directly. I think we can all see why...

SO GUESS WHERE I'M SENDING MY NEXT DONATION!!!