Christopher and Dana Reeve Paralysis Act

[beachlover]

No offense intended at all to anyone, any posts, but this is one of the BEST POSTS I've read during my 5 years or so on CareCure. Congratulations to everyone and thanks for all of your hard work.

[cheesecake]

Originally Posted by betheny

Offtopic-

Good work, fellow advocates! We need to all be patting ourselves and our buddies on the back. Our 10,000 letters, calls and visits didn't go down The Black Hole after all! All the money we spent on trips to DC, all the politicians that invested their time in supporting us...This feels like a dream to me.

I read a stat once, wish I could remember exactly. It said that only 1 in a thousand bills that are introduced to Congress are ever passed into law, I think? We beat the odds on a phenomenal scale with this one, for sure.

I wish Christopher and Dana Reeve were here to see it. I never met him but she was so proud of us at the first rally, when she spoke about how much it was needed and how she knew it was really hard for us to travel to DC. And I wish Dogger was here...the only Aussie that ever went to DC to support us in lobbying for the CDRPA.

Don't mean to be a downer. It sucks when people deserve to see something through and they don't get to...

I was there the first time this Act was announced, with Chris and Dana on Chris' 50th birthday, one of a small crowd. I was present again the next time it was announced, with Chris and Dana again. I swore after we lost Chris and then Dana that I would see this Act through. I am so happy but still holding batted breath.

I do believe Chris and Dana are smiling on us, happy that the community moved forward. Sue, Betheny, Marilyn, Bob, Chuck, Todd, Scott P and all the others, thank you

[cheesecake]

I have two boys grinning from ear to ear.

My son and I have made numerous trips to meet with Senators and Congressmen to get this Act passed. He wrote this essay as a "leave behind" on our visits 2 years ago. I was really proud of him and wanted to share this. I hope it gives you insight as to why this Act has been so important to my family. I have edited some info for privacy reasons. Please note that this was written before Dana's name was added to the Act.

Sean T. M.

Maryland

Hi, my name is Sean M and I am 14 years old. I am in the 8th grade at SJA School in Maryland. My mom has a spinal cord injury. I have never known her without the paralysis because she was hurt before I was born. My mom does things that most moms do but she has to find new ways to do them. Something’s she can’t do and I wish she could. When we went snow inner tubing she couldn’t get up and down the inner tube slopes. She did get to ski though using a bi-ski.



My mom helps other people who have spinal cord injuries. She listens to their stories and she tries to find them help, rehabilitation and she lets them know there is hope. Sometimes I listen when she takes calls. I want a job like her when I grow up, helping people. My mom hopes that one day there will not be a need for jobs like she has. I hope so too.



I have a type of paralysis too, cerebral palsy. Today, most people don’t notice it and I don’t either. For 9 years I got most of my food through a tube in my stomach because I could not swallow. The paralysis messed up the muscles in my throat. When I was one, the doctor told my mom and dad I had spastic quadraparisis. The doctors told them all the things I would never do. My parents never gave up hope and worked with me a lot. Today I do lots of things, I play baseball, football, and I am in a regular class at school and have lots of friends. The doctors said I would not walk, have very little use of my hands and my speech would be hard to understand. My mom and dad just didn’t listen.



I want you to get the Christopher Reeve Paralysis Act out for a vote and to make it happen. Christopher Reeve always made things happen and he gave people hope. The CRPA will help with research, resources, and rehabilitation

Paralysis hits the whole family, even the kids. My life is good but I know my mom hopes for more. Please help it happen. Thank you for meeting with our group today.



GO FORWARD,

Sean

[gurly2356]

Sorry..there are a couple of us unsure in the chat room on what this act really means for us? We obviously know its a step forward in the right direction, but what is it actually doing for us?

[betheny]

Now, ultimately only $25 million came with this bill (I think. Everything I read says something different!) That is open to further negotiation. As Leo says, you get the bill passed, the funding follows. He also says that it is nearly impossible to kill government programs if you can just get them going. So this is just the beginning, but it's a huge step. The main goal for many of us (at least at u2p) was to get a clinical trial network rolling. That is the fastest way to get therapies out of the lab and to the bedside. Wise has always felt that this bill was our best hope for an American Clinical Trial Network for paralysis. I'm not a political genius. Since Wise and Dr. McDonald said it was our best chance, I figured it was.

This is the first bill ever passed that directed funding to paralysis, specifically. It should eliminate redundant research, so things won't be repeated over and over, and that saves money.

And in the year to come it should dovetail nicely with the upcoming ESC research, I think.

The Christopher and Dana Reeve Paralysis Act has three components that support and enhance paralysis research, rehabilitation, and quality of life programs:

· Paralysis Research - Expands research on paralysis at the National Institutes of Health (NIH). This will encourage collaborative research by connecting scientists conducting similar work to further enhance understanding and speed discovery of better treatments and cures.

· Paralysis Rehabilitation and Care - Builds on research to enhance daily function for people with paralysis including a Clinical Trials Network to measure effectiveness of certain rehabilitation tactics and encouraging shared findings on paralysis to improve rehabilitation.

· Improving Quality of Life for Persons with Paralysis and Other Physical Disabilities - Works with the Centers for Disease Control and Prevention (CDC) to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities.

[GRAMMY]

Job well done everyone. The day has finally come. Yes, it's turning around.
Hang on, here we go!!!!!!!!!!!!!!!!

[beachlover]

Originally Posted by cheesecake

I have two boys grinning from ear to ear.

My son and I have made numerous trips to meet with Senators and Congressmen to get this Act passed. He wrote this essay as a "leave behind" on our visits 2 years ago. I was really proud of him and wanted to share this. I hope it gives you insight as to why this Act has been so important to my family. I have edited some info for privacy reasons. Please note that this was written before Dana's name was added to the Act.

Sean T. M.

Maryland

Hi, my name is Sean M and I am 14 years old. I am in the 8th grade at SJA School in Maryland. My mom has a spinal cord injury. I have never known her without the paralysis because she was hurt before I was born. My mom does things that most moms do but she has to find new ways to do them. Something’s she can’t do and I wish she could. When we went snow inner tubing she couldn’t get up and down the inner tube slopes. She did get to ski though using a bi-ski.



My mom helps other people who have spinal cord injuries. She listens to their stories and she tries to find them help, rehabilitation and she lets them know there is hope. Sometimes I listen when she takes calls. I want a job like her when I grow up, helping people. My mom hopes that one day there will not be a need for jobs like she has. I hope so too.



I have a type of paralysis too, cerebral palsy. Today, most people don’t notice it and I don’t either. For 9 years I got most of my food through a tube in my stomach because I could not swallow. The paralysis messed up the muscles in my throat. When I was one, the doctor told my mom and dad I had spastic quadraparisis. The doctors told them all the things I would never do. My parents never gave up hope and worked with me a lot. Today I do lots of things, I play baseball, football, and I am in a regular class at school and have lots of friends. The doctors said I would not walk, have very little use of my hands and my speech would be hard to understand. My mom and dad just didn’t listen.



I want you to get the Christopher Reeve Paralysis Act out for a vote and to make it happen. Christopher Reeve always made things happen and he gave people hope. The CRPA will help with research, resources, and rehabilitation

Paralysis hits the whole family, even the kids. My life is good but I know my mom hopes for more. Please help it happen. Thank you for meeting with our group today.



GO FORWARD,

Sean

cheese,
sitting here with tears streaming down my face. on my behalf, please go and squeeze the heck out of sean and tell him that there is a middle aged women in california who thinks he absolutely rocks. and after he protests and squirms away, lets all take a deep and grateful breath that the tide is turning....thankfully because of you, sean and everyone who has worked so hard in so many way.

beachlover

[JenJen]

Thank you to each of you who have worked so long and so hard to make this happen.

[betheny]

Sean really does seem awesome. We should have unleashed him on Coburn years ago!

[Norm]

Colburn wasn't able to stop this because it was lumped in with the Land bill, right?

And is the final step the Presidents signature?