Spinal Cord Injury Network USA (SCINetUSA)

[Chaz19]

Wise, Jim, Would you urge people to donate through facebook, in order to track who is donating and to build momentum?

[Wise Young]

Wise, Jim, Would you urge people to donate through facebook, in order to track who is donating and to build momentum?

Chaz,

We are using Facebook, Myspace, and direct contributions. Various people prefer different mediums and we respect that. Facebook is very convenient because it tracks who recruited whom. Some people may prefer to give more privately.

Wise.

[Wise Young]

Antiquity,

There are still so many questions and so few answers...

I like to get to the point. I truly believe in this and I have been looking for something to back for so long.

Wise,

Your a trailblazer. Your right there are no more excuses and the amount of money the CRF has made this should have already been done. What I see happening here is going to be a domino effect. All the scientists that have their few pieces of the puzzle will eventually join groups and collaberate. Something will give. I just hope that some of us have a real shot one day. HMMM money. There are many people that can afford to give the amount needed and that's sad. Hospitals might be a good bet.

It's very scary to think about the possibilities of our chances in the next decade. Or if the therapies will be effective? and how mny tries and times. It's like consistantly rolling the dice. When this happens though, I see many groups joining teams and working together everywhere trying to find the golden ticket. As far as the UCBC and lithium its a risk. However it's those risks and chances you take in life always end up being the most worthwile. oy vey. If CRF did this years ago we could have been so much farther ahead.

Sometimes I imagine an alien coming into my room and curing me.

Hi, Cheryl,

I strongly support the Christopher and Dana Reeve Foundation (CDRF).

You know, for several years, I was reluctant to come out and ask people to support clinical trials. It is not something that one says that one will do and not deliver. Once the appeal is out there, it is a promise that must be fulfilled. It is a scary but something that we must do.

Wise.

[boda]

Antiquity,



Sometimes I imagine an alien coming into my room and curing me.

I have often wondered if that is what it is going to take.

[boda]

Wise,

I was watching Bill Gates and Warren Buffet talk last night on FFN. As many of us know, Buffet is giving the majority of his wealth to the Bill and Melinda Gates Foundation. Would it help if we try to solicit organizations like BMGF to get cash money? Or is that something that is already being taking care of, way over my head, or a complete waste of time. I'm sure your people have thought about this, but i have idle hands these days and am getting tired of hoping aliens are going to knock on my window.

Thanks-

Robbie

[spidergirl]

Hi, Cheryl,

I strongly support the Christopher and Dana Reeve Foundation (CDRF).

You know, for several years, I was reluctant to come out and ask people to support clinical trials. It is not something that one says that one will do and not deliver. Once the appeal is out there, it is a promise that must be fulfilled. It is a scary but something that we must do.

Wise.

I respect the CDRF immensely. I have been to a few benefits here in LA and they were great. My point was that they get the kind of monies we are needing for chronic clinical trials. I was given a resource guide from them in rehab that was very helpful. They did very well and have been the leaders of sucess in this arena.

However,

We must move faster than a speeding bullet and more powerful than a locomotive....as he would have. I wish I had a chance to meet him. I had my injury after he passed.

[Wise Young]

Wise,

I was watching Bill Gates and Warren Buffet talk last night on FFN. As many of us know, Buffet is giving the majority of his wealth to the Bill and Melinda Gates Foundation. Would it help if we try to solicit organizations like BMGF to get cash money? Or is that something that is already being taking care of, way over my head, or a complete waste of time. I'm sure your people have thought about this, but i have idle hands these days and am getting tired of hoping aliens are going to knock on my window.

Thanks-

Robbie

Robbie, I think that everybody under the sun must have asked BMGF to fund their worthy causes. It doesn't hurt to ask. Wise.

[Random]

We are using Facebook, Myspace, and direct contributions.
Wise.

Can you give a link to a place for direct donation that is clearly tied to the trials network? I want to ask family to ggive, and they don't do social netwourking.

[Jim]

Can you give a link to a place for direct donation that is clearly tied to the trials network? I want to ask family to ggive, and they don't do social netwourking.

Random, the website is done but we ran into a snag. As soon as everything is place I will post the website where people can donate directly to the North American Clinical Trial Network (NASCINet).

[cheesecake]

Cheesecake,

do you think CDRF will give some financial contribution to the NASCINet?

Thanks,

Paolo

The Reeve Foundation gives grants to researchers based on a peer review process and application. During the dry years with the NIH, the competition had been very stiff. I don't know what their criteria is, just that it is part of a process, peer review, grant application, etc.

I did a search of the Reeve Foundation and found this: http://www.christopherreeve.org/site...ot_Program.htm

as well as this sobering link/post:
http://www.christopherreeve.org/site...d_research.htm

[antiquity]

Random, the website is done but we ran into a snag. As soon as everything is place I will post the website where people can donate directly to the North American Clinical Trial Network (NASCINet).

We can also do that through the Keck Center donation link by choosing clinical trials in the drop down menu and specifying nascinet as the recipient correct?

[paolocipolla]

The Reeve Foundation gives grants to researchers based on a peer review process and application. During the dry years with the NIH, the competition had been very stiff. I don't know what their criteria is, just that it is part of a process, peer review, grant application, etc.

I did a search of the Reeve Foundation and found this: http://www.christopherreeve.org/site...ot_Program.htm

as well as this sobering link/post:
http://www.christopherreeve.org/site...d_research.htm

Cheescake,

thank you for your answer. From your second link I read:

...."we remain committed to our mission to develop safe, effective therapies and cures for the paralysis "...

To find effective therapies as I understand we need basic research and clinical trials. That is why I would expect CDRF to give some economical support to the NASCINET just as they finance basic research.

I will write them an email to ask about that.

Paolo

[Chaz19]

I wonder what Christopher Reeve would do if was at the helm? Paolo- I will ask as well.

[poonsuzanne]

Greetings Fellow CareCure Members,

I‘m Jim Bennett and I work at the W.M. Keck Center, Spinal Cord Injury Project, at Rutgers University. I am asking you to join me in launching spinal cord injury clinical trials in the United States!

On March 17, 2009, The North American Spinal Cord Injury Network (NASCINet) was formed. This came at the conclusion of the First Investigator Meeting at University Medical Center Brackenridge in Austin, Texas. The goal of the network is to test promising therapies to restore function in people with chronic spinal cord injuries (SCI).

We, the SCI Community, can and must support these trials by raising the needed funds. If we take an active role and work together, clinical trials for SCI will begin this year!

I am building a network of recruiters, “The Clinical Trial Support Squad”, whose goal is to procure donations from 100 individuals and families. We will use social networking websites such as Facebook, MySpace and Twitter to reach potential donors. Let’s get these clinical trails going!

If you would like to join “The Clinical Trial Support Squad” and get these trials going now, email me- jimbenn@rci.rutgers.edu.

Thank you! Jim

More details on the trials are at http://nascinet.org

Dr. Young & Jim,

Congratulations on the setting up of the NASCINet!! It's an amazing job!!!

Suzanne

[paolocipolla]

Cheescake,

thank you for your answer. From your second link I read:

...."we remain committed to our mission to develop safe, effective therapies and cures for the paralysis "...

To find effective therapies as I understand we need basic research and clinical trials. That is why I would expect CDRF to give some economical support to the NASCINET just as they finance basic research.

I will write them an email to ask about that.

Paolo

I had a few email exchange with the CDRF. I asked if CDRF would support clinical trials for chronics made by NASCINet.
As I expected they told me that:
"The Christopher and Dana Reeve Foundation funds the North American Clinical Trials Network"...

And also:

"NACTN will test those acute and chronic therapies that are the most promising and are based on rigorous scientific evidence. The Reeve Foundation has spent several years carefully building the infrastructure and expertise that is necessary to carefully test potential interventions in a way that results in data that are interpretable and insures patient safety. The NACTN patient registry, unique in this field, will provide a statistical and scientific platform to develop the data, logistics and collaborations necessary to conduct Phase I and Phase II clinical trials of emerging neuroprotective and neuroregenerative therapies, particularly those that can be administered in the very early stages of injury. It is also the repository of high quality, standardized, and validated acute care and follow-up data on a representative national sample of male and female adult patients who have suffered a spinal cord injury with neurological deficits. This acute care and follow-up data is essential to defining the natural course of recovery of individuals who have suffered a spinal cord injury, something that has never been done in this field.

The Reeve Foundation believes that NACTN represents state-of-the-art capacity to rationally test emerging SCI therapies in a way that guarantees meaningful data and the highest safety possible for patients participating in the trials."

I am thakful to CDRF for all that it does for SCI research, but, since I have chronic SCI, common sense suggest me to direct my support towards who is more "chronic oriented".

Paolo