Christopher and Dana Reeve Paralysis Act

[Steven Edwards]

Originally Posted by aton

Has anyone heard anything more about the CDRPA since last week or are the Senators still talking about it behind close doors?

The chances of it passing before the year is out are slim. The Senate is out of session right now and they'll be back briefly for what amounts to a lame duck session after the election, from my understanding.

Try, try again.

[Leo]

does this look ok?

also would be interesting to see how many opponents did the same thing?

Hello John,

I received a letter from you about the passage of the ALS Registry Act, how you supported it and were a co-sponsor. I am very happy to finally see this needed legislation enacted as I have many friends with ALS and have lost good friends do to it.

However your action towards this legislation seems hypocritical to what I’ve been told by you and your aides for the past five years on the Christopher Reeve Paralysis Act. As you know by now I have been paralyzed from the shoulders down since 1976. However despite this in the past four years I have made trips to DC to meet with your aides advocating for passage of the CRPA..

During these visits and in numerous emails back and forth with your aides I have heard some of the concerns you had. Starting with you don’t co-sponsor legislation directing the N.I.H. on how to do their business, 2 you don’t like to support or co-sponsor disease specific conditions, not taking sides sort of speak, 3. Financial concerns or budget off sets; however as you can see in the accompanied letter the CDRPA will invest to quickly save money according to the experts.

So John maybe now you can understand my confusion in regards to your action on the ALS Registry Act.

I look forward to your reply and do hope that maybe you will have a change of opinion on the CDRPA also.

Sincerely, Leo

[Chaz19]

Leo, this is very well-written. I think you do a fine job of laying out all of their concerns and then dismissing them. It may be helpful to others to attach the accompanying letter.

Again well done.

[Leif]

To nice :-) But Leo, great. I don't know what to say. I just feel we must do more. SCI'eds are dying (some are) thus one have to push hard. So thanks. -Some (ancient rehab facilities) really have to go full out and save lives, and not making it just another working place to get some income.

[cheesecake]

Originally Posted by Steven Edwards

The chances of it passing before the year is out are slim. The Senate is out of session right now and they'll be back briefly for what amounts to a lame duck session after the election, from my understanding.

Try, try again.

Steven: In 2006, 9 of us traveled to Washington DC during a lame duck session and we were able to get the CDRPA thru the House as well as the Senate. Unfortunately, a lone Senator held the bill up that you.

If anyone wants to try a run at DC next week, I am game.

[cheesecake]

Originally Posted by Leo

hey cheesecake,

good to hear from u

any scoop on what CRF plans are 4 next year CDRPA

I suggest that you call the VP of Legislative activities for an update.

[cheesecake]

Leo: Obviously the goal was to push forward: http://www.christopherreeve.org/site...033&ct=6493597

[Leo]

It sounds and I hope the senate will act today in a posative way on CDRPA

C-SPAN2 between 11 central and who knows

many of u have earned the right to watch

let others know that might not check in here

[Jeepin]

Thanks for posting the update Leo...You beat me to it.

I have it on here. Those of you at work or not in front of a TV you can watch it online.
http://www.c-span.org/Watch/C-SPAN2_rm.aspx

Today is the day!

[Jeepin]

It's on...here comes Coburn...