Cure 101/ Lobby Info

[momo3]

The Rainman,
First I am sorry I did not respond to your post earlier but I did not have time to use my computer till now. I can not write the same letter that you did because I am not a registered repubican and do not vote the majority of the time for republicans (call me a "loon" DA ). I did not vote for W either. I have emailed my rep. and my senators. I have signed petitons and sent the websites to family and friends. I have told two of my reps. that they should co sponsor CDRPA because their republican counter part is. I do not know what else to do. I have given up on the whole political process in the USA.

[TheRainman]

Momo3

You are exactly what this community needs. As far as not being a republican, don't tell them. I've been voting democratic for the last six years.

And thank you for supporting us. We just need more LIONS.

[Nicksdad]

The letter writing thing...

My letter was sent to the president a while ago, I recently let the repu. cand. know how I stand by sending them a copy.
Here is some contact information:

Willard Mitt Romney
info@mittromney.com
Senator John Sidney McCain III
http://www.johnmccain.com/Contact/
Rudolph W. Giuliani
webteam@joinrudy2008.com
Fred Thompson
http://www.imwithfred.com/contact.aspx
Senator Samuel D. 'Sam' Brownback
http://www.brownback.com/s/Contact/t...8/Default.aspx
James S. 'Jim' Gilmore
info@gilmoreforpresident.com <info@gilmoreforpresident.com>
Representative Ron Paul, M.D.
mail@ronpaul2008.com <mail@ronpaul2008.com>

I have not looked up dem.s yet. If I did this right, my letter is attached as a pdf.

[Wise Young]

Dr. Wise

Are you as surprised as I am that there was no replies to my last post. You would of thought you would of seen a few saying they have sent emails or letters using their vote as leverage.

I have seen others asking the communty to send letters with recommendation on what to say. And they all have no teeth to them.

This is a great communty for CARE but not for CURE. Everybody wants to act like sheeps. We need to act like lions.

These politicians care about one think. Staying in office. If Bushes advisers told him that it would cost him reelection two years ago if he vetod the stem cell act the first time he would of passed on it.

Dr.wise, I don't know how many members you have here. But if you want to get the sheeps to help pass the initiatives we need passed so we can walk again you need to direct them in the right direction.

And I'm just saying you need to come right out and tell them they can't vote for anyone that doesn't support our cause. Really how weak can some of these people be by voting for Bush, and you know who you are.

Why do you people think sharpten, jackson and falwell to name a few have so much power. They carry votes. Well this communty carries votes too. But you got to stand up(well you know what I meant).

Dr. Wise, you said in a prior post that we should send letters and emails. And I agree with you. I'm guessing that theirs 10,000 members here. If we sent 10,000 emails to these presidential candidates that don't support us and tell them that they are not getting our vote and the other guy is because he supports stem cell research. Thats like 20,00 votes to him. That will wake them up.

I know a lot of members are not going to like what I wrote, but it's the truth. You can keep complaining that they don't pass this and that. But they really don't care about us. They care about their jobs.

Rainman,

In addition to wanting to stay in office, a lot of politicians care about their country and the people that they represent. You can appeal to their better side by telling them the a vast majority of scientists believe that spinal cord injury is curable, that it is a matter of time rather than a matter of if the spinal cord can be cured, and it would save not only $10 billion a year but incalculable suffering.

Wise.

[TheRainman]

Wise

I see your point. I'll revise my letter. It's a good point. I'll try anything that makes sense.

Chas

[Varian]

WE are always stronger in groups we should advertise the chat room on rutgers more aggresively on here. If a pack of us frequently talk in a chat room it would help us move in a type of lench mob with specific daily goals more effectively.

For instance having a master list of all political leaders email addresses on a web site for ease. I believe face to face is ultra key. But it would seem wise to stake out the offices of the politians and catch them to their cars from teh office. Or buying them lunch. Delivered by you or the restuarant with a card emphasizing the need for a cure.

[Don D. 73]

Model letters

I would like to see more examples of really good "fill in the blanks" letters. Composing really effective letters can be a real challenge for us. Literally, the act of folding a paper letter, inserting it into an envelope, and applying the postage, all can be a real challenge for some of us. It's just another bitter pill to swallow for many of us unable to achieve even the slightest bit of independence.
So anything that the more able-bodied members of our community can do to facilitate the type communication to our various elected officials would be greatly appreciated by myself and other high quads.

[wysong417]

I have an idea , why doesn't someone write a letter all of these polititians trying to get votes for office and let them know thats its not a question if theres a cure but just a matter of time and let them know how many votes they'll be missing out on if they don't make an effort to address this problem and fund research and get as many of us with sci's to sign it as we can. I mean the power is in numbers, and if we all get together and take serious action I know we can make something happpen. I'm not the only one who's tired of being paralyzed and ignored by everyone who can make a difference. If we can put our heads together we can definately raise some eyebrows.

[Han Solo]

Thia question is for Dr. Young. Dr. Young, I'm curious what would be a reason for the FDA to put a hold on a clinical trial. If theres sufficient data on therapies and it is shown to work in laboratories, like Dr. Davies decorin research, then whats the next step in getting the ball rolling? Is it the funding, or if its shown to work will they give a grant. I'm curious because I was at working2walk 08 and I spoke with Dr. Davies and he all but assured me that clinical trials were on the horizon. Also if his work is as great as it seems then how come it will take 2-3 more years to be approved. If you could shed some light on this subject it would be appreciated. Thanks.

[Wise Young]

Thia question is for Dr. Young. Dr. Young, I'm curious what would be a reason for the FDA to put a hold on a clinical trial. If theres sufficient data on therapies and it is shown to work in laboratories, like Dr. Davies decorin research, then whats the next step in getting the ball rolling? Is it the funding, or if its shown to work will they give a grant. I'm curious because I was at working2walk 08 and I spoke with Dr. Davies and he all but assured me that clinical trials were on the horizon. Also if his work is as great as it seems then how come it will take 2-3 more years to be approved. If you could shed some light on this subject it would be appreciated. Thanks.

Han Solo,

At the level of phase 1 trials, the FDA is primarily concerned with safety. If you can prove that a treatment is reasonably safe, the FDA will generally permit the trial to go ahead. By the way, the treatment does not have to be completely "safe" to be tested in clinical trial but the risk should be balanced by potential benefit. Much depends on the therapy.

Usually, the FDA is cautious when it comes to new therapies that have never been applied to humans. In such cases, they require a full set of studies in small animals (rodents) and one large species (cat, rabbit, dog, pig, monkey) showing safety. What is safe? Mostly, the FDA requires that the proposed treatment dose and route will not cause cardiac, liver, kidney, and brain damage, or cancer. There is a separate requirement to rule out teratological effect, i.e. effects on developing fetuses, before they will allow the treatment to be used in pregnant women.

If the risk is significant, then the risk must be balanced by potential benefit. Of course, if the risk is low, the FDA does not require as much proof of benefit. For example, in a disease where the person will die without therapy and there is no therapy, a treatment that has potential of slowing or reversing the disease will be allowed despite significant risks.

In a condition where the risk of death is low, the FDA may be reluctant to approve a risky therapy without convincing evidence of efficacy. For example, I suspect that this may be the reason why the FDA put on a hold on the Geron study because the risk of life-time immune suppression is high and the potential benefits of the therapy for ASIA A patients may not have been convincing. The FDA may be more willing to approve a trial on SMA (spinomuscular dystrophy) or ALS (amyotrophic lateral sclerosis).

I am not sure of the status of decorin. I do hope that we will hear more about it because I have invited Stephen Davies to speak at the Third International Spinal Cord Injury Treatment and Trials Symposium, which will be held in Beijing on October 30 to November 2.

Wise.

[Wise Young]

I moved this thread to the FLA forum because it is more relevant here and was not getting many views in the Cure Forum.

Wise.

[mswestfall]

I am trying, without much luck to find out if there is an update to legislation and advocacy for spinal cord injury? The media attention is focusing on raising money privately; however, what is being done to increase government funding? It seems the current administration is giving money away to just about any organization. Other than the Reeve Foundation is there an advocacy group? I understand we should be writing to our governmental officials; however, to me, I don't feel that's enough. The last update regarding legislation via this forum was 2007-08...to me that should be an ongoing action item if a cure is a top priority.

[Karen M]

Check out Unite 2 Fight Paralysis www.u2fp.org