Christopher & Dana Reeve Paralysis Act questions

[StemCells&AtomBombs]

Originally Posted by VJS

Post above copied from http://sci.rutgers.edu/forum/showthr...=81231&page=47

Thank you for this information. It's a good starting point for me.

[StemCells&AtomBombs]

Originally Posted by Wise Young

I agree with khmorgan. The CDRPA was largely an unfunded mandate. While some funds were appropriated for non-NIH portions of the act (i.e. Center for Disease Control grants for quality of life, etc.), the NIH portion of the act was left up to the Human Health Services, Labor, and Education Committee. The NIH budget was not increased and therefore all funds would have come from other NIH activities, which were already being cut. One of the reasons why it never went further was because we stopped lobbying after the act was passed. We did not continue to put pressure on Congress to ensure that the funding would go to clinical trials or activities that the community wanted. Part of the reason is because the community really did not have a consensus concerning what it wanted. The W2W rally moved away from Washington DC the year after the act was passed.

Wise.

Thank you Dr. Young for your opinion on this.

More than wonder why W2W moved their location on their conference, I think the more potent question is why the Reeve Foundation hasn't been pushing this?

They push paralyzed mother and father of the year.
They push wheelchair rock climbing and other such things.

So why hasn't the group who the bill was named after dealt with the issues of non funding?

I will write to them to ask and I will also write to the Representative Langevin about these things. When I get an answer, I'll let you all know.

It seems like the biggest organizations are being let off the hook on this.

[Wise Young]

Originally Posted by StemCells&AtomBombs

Thank you Dr. Young for your opinion on this.

More than wonder why W2W moved their location on their conference, I think the more potent question is why the Reeve Foundation hasn't been pushing this?

They push paralyzed mother and father of the year.
They push wheelchair rock climbing and other such things.

So why hasn't the group who the bill was named after dealt with the issues of non funding?

I will write to them to ask and I will also write to the Representative Langevin about these things. When I get an answer, I'll let you all know.

It seems like the biggest organizations are being let off the hook on this.

Dennis,

The Christopher Reeve Foundation is not a lobbying organization and is in fact prohibited from lobbying as a 501c3 organization. They were present at all the rallies and did what they could to provide support. This is not something that they should be faulted for.

The Christopher Reeve Paralysis Act had been proposed back in 2001. It never got out of senate committees, however. After Christopher Reeve died in 2004, carecure members decided to hold a rally in Washington DC in 2005 and one of our goals was to revive the CRPF from mothballs. They did so but the bill failed to pass in 2006. In 2007, the bill had been blocked by the Senator Tom Coburn from Oklahoma even though it was passed by the House of Representative and would have been passed by a majority in the Senate. In 2008, Obama won and he pledged that the CDRPF (Dana's name was added after she died) be passed in his first 100 days. It did pass but no funds was appropriated and the implementation was left up to the NIH.

I think that the W2W group decided that the educational mission of the rally would be better served by moving the meeting to different places in the United States so that some people who cannot travel to Washington DC can attend. You can read all about the history of the bill on this site by doing a search for CDRPA.

Wise.

[paolocipolla]

Here is the video of Obama signing the act:

http://www.youtube.com/watch?v=it9HbCD_3TI

Paolo

[paolocipolla]

Originally Posted by Wise Young

Dennis,

The Christopher Reeve Foundation is not a lobbying organization and is in fact prohibited from lobbying as a 501c3 organization. They were present at all the rallies and did what they could to provide support. This is not something that they should be faulted for.
....
Wise.

Wise,

how come you are being very kind with the Reeve Foundation lately?
There are many ways to skin a cat as there are many ways to lobby.

Paolo

[StemCells&AtomBombs]

Originally Posted by Wise Young

The Christopher Reeve Foundation is not a lobbying organization and is in fact prohibited from lobbying as a 501c3 organization. They were present at all the rallies and did what they could to provide support. This is not something that they should be faulted for.

I did a little bit of looking around at 501c3 organizations and they are completely allowed to lobby (http://www.asaecenter.org/Resources/...emNumber=12202). They can't support a specific candidate for office, but they can lobby for legislation and most of the big orgs do. I've heard, after checking with people in the know, that the rule of thumb is that these types of orgs can spend about 10% on lobbying efforts. Unite2FightParalysis is also a 501c3 organization (http://www.unite2fightparalysis.org/support_us) and they were very involved in getting things done in regards to this piece of legislation.

CDRF contracts their lobbying to Michael Manganiello's firm (http://www.hcmstrategists.com/clients.aspx) and in fact Michael Manganiello served as senior vice president of government relations for the Christopher and Dana Reeve Foundation.

What is important here is not to assign blame, but to try to understand why such a well written law has not been used to its full potential. Here is a picture of Michael Manganiello with CDRF people,

http://communities.kintera.org/REEVE.../31/49632.aspx
So I wonder why a big group like CDRF, who appear to have taken credit for passing the law, have not tried to exploit the benefits further.

Anyways, this is an important research project because by examining past mistakes, we'll make certain not to repeat them.

[Chaz19]

Originally Posted by StemCells&AtomBombs

Thank you Dr. Young for your opinion on this.

More than wonder why W2W moved their location on their conference, I think the more potent question is why the Reeve Foundation hasn't been pushing this?

They push paralyzed mother and father of the year.
They push wheelchair rock climbing and other such things.

So why hasn't the group who the bill was named after dealt with the issues of non funding?

I will write to them to ask and I will also write to the Representative Langevin about these things. When I get an answer, I'll let you all know.

It seems like the biggest organizations are being let off the hook on this.

Please do. I hope you hear from them. I've contacted them multiple times with some very specific questions and have never received a comprehensive answer. I went away after being ignored for months.

[StemCells&AtomBombs]

Originally Posted by Chaz19

Please do. I hope you hear from them. I've contacted them multiple times with some very specific questions and have never received a comprehensive answer. I went away after being ignored for months.

People have told me this before, about not getting an answer. We may have to write as a group. But first things first. I just got word from Roman Reed telling me that the Roman Reed law goes to the senate appropriations committee on 3 August, so this will be my first priority for a few weeks. Let's all get geared up again.

[Wise Young]

Originally Posted by paolocipolla

Wise,

how come you are being very kind with the Reeve Foundation lately?
There are many ways to skin a cat as there are many ways to lobby.

Paolo

Paolo,

I am not being kind or unkind. I happen to know quite a lot about the Christopher Reeve Foundation, 501c3, and lobbying. I am stating facts.

Dennis,

You are right that a 501(c)(3) organization can engage in some lobbying but the IRS reserves the right to judge how much and what is appropriate. According the Internal Revenue Service,

In general, no organization may qualify for section 501(c)(3) status if a substantial part of its activities is attempting to influence legislation (commonly known as lobbying). A 501(c)(3) organization may engage in some lobbying, but too much lobbying activity risks loss of tax-exempt status.

Legislation includes action by Congress, any state legislature, any local council, or similar governing body, with respect to acts, bills, resolutions, or similar items (such as legislative confirmation of appointive office), or by the public in referendum, ballot initiative, constitutional amendment, or similar procedure. It does not include actions by executive, judicial, or administrative bodies.

An organization will be regarded as attempting to influence legislation if it contacts, or urges the public to contact, members or employees of a legislative body for the purpose of proposing, supporting, or opposing legislation, or if the organization advocates the adoption or rejection of legislation.

Organizations may, however, involve themselves in issues of public policy without the activity being considered as lobbying. For example, organizations may conduct educational meetings, prepare and distribute educational materials, or otherwise consider public policy issues in an educational manner without jeopardizing their tax-exempt status.

What is generally considered to be inappropriate? One particularly inappropriate form of lobbying would be to lobby for legislation that ends up funding or benefiting the organization. The Christopher and Dana Reeve Paralysis Act falls under the category of legislation that would benefit the foundation. While CRPF can provide educational material, attend W2W meetings, and talk about the great promise of spinal cord injury research, direct lobbying for or against legislation such as CDRPA would be regarded by the IRS as lobbying and would have jeopardized CRPF's tax-exempt status.

Wise.

[VJS]

Originally Posted by Wise Young

We did not continue to put pressure on Congress to ensure that the funding would go to clinical trials or activities that the community wanted. Part of the reason is because the community really did not have a consensus concerning what it wanted.

Wise.

I know I wanted additional money added for research. When was the "community" asked for a consensus.

I'm sure most people involved in advocacy for the CDRPA would continue to rally for research funding. Many worked hard for passage. They visited their legislators and presented them with signed petitions, Leo organised a protest on the steps of the Dirksen Senate Office Building. Who took the air out of our baloon?

The Paralysis Resource Center started by the Reeve Foundation was funded through the Centers for Disease Control. I beleive that funding continues.

Are some people more knowledgable about lobbying efforts than others?