Christopher and Dana Reeve Paralysis Act

[cheesecake]

There are meetings going on to obtain funding.

[Leo]

There are meetings going on to obtain funding.

Thanks Cheesecake,

please tell us more,

who's having meetings

what's the process......yada yada

[Chaz19]

Bump. What is shakin out? Can our community help? I guess it's particularly hard for me not knowing what's going on because many friends and family helped contribute to travel, lodging expenses for trips down to DC. It's difficult not being able to give any definitive answer or having any clue what's going on?

[IMHopeful]

I'm trying to get some answers and will post as soon as I know something. We've all put a considerable amount of time and effort into getting this bill passed and will continue to do so until it's funded. We're not finished with this bill yet.

[antiquity]

Steven could you provide an update? TIA.

Hopefully, someone will correct me if I'm wrong. Titles I&II of the Christopher & Dana Reeve Paralysis Act bill have not been funded. It's apparently up to Senator Harkin, the head of the Senate Appropriations Committee, to do so so I'd suggest we send him a short message via his website here thanking him for supporting the bill thus far and reminding him that there's still work to be done.

This is what I posted in my last message to him:

Thank you for your continued support for the Christopher & Dana Reeve Paralysis Act Bill which was included as Title XIV in the The Omnibus Public Land Management Act of 2009 and signed into
law on 3/30/09. Please do all you can to ensure that titles I & II of the Christopher & Dana Reeve Paralysis Act Bill are funded.

This form letter can be personalized and used as well.

[Steven Edwards]

Steven could you provide an update? TIA.

I haven't kept updated, embarrassingly. I do know that, as of now, the majority of it is unfunded. Nothing has changed on that front.

[Chaz19]

Anything new to report?

[Chaz19]

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

[keeping on]

Chaz, we get an occasional blip from the Reeve Foundation; nothing really signifcant. I've corresponded with them at times asking for timing of trials and discoveries of their research. The answeres I get are nebulus at best. I see it as a collection of people who have jobs. I don't see the passion we are looking for for a cure. Just my thoughts, but that's how I see it.

Keeping on

[IMHopeful]

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

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

[paolocipolla]

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]

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]

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

Yes, it is currently on going.

[Chaz19]

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?