From DA Poll to Fundraising

[Jeff]

Sorry to keep this going but I think this poll might be helpful...

So...how many of us agree with DA's tactics?

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[This message was edited by Sue Pendleton on December 09, 2001 at 01:00 AM.]

[vgrafen]

Jeff, I strongly disagree with anyone continuing to feed this idiocy. I realize some of our forum members enjoy this pissing contest, but the shit's old. Take the high ground, Jeff, and leave the sniping alone. http://sci.rutgers.edu/forum/images/smilies/confused.gif http://sci.rutgers.edu/forum/images/smilies/mad.gif

vgrafen

[Jeff]

I'm interested in the results of the poll. Maybe you should take the high ground with me. http://sci.rutgers.edu/forum/images/smilies/smile.gif

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[DA]

.

[Jeff]

You've defined them so well I don't need to say anything. Besides, I don't want people to respond to my perception of your tactics, just to what they see in your posts...

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[DA]

jeff this poll is about your perception. i want a cure now, today, pronto. im sure everyone else does too. so what is there to poll? my opinion and how i express it?

[Jeff]

LOL. C'mon DA, you're fearless. It's only a simple poll. People will respond to whatever they think it means.

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[DA]

ummmmmm, i dunno jeff. a unclear definition and everyone thinking you mean something different will lead to inaccurate result as well as confusion. but ya know jeff, im not surprised. you being in florida, you guys are good at unclear confusing votes.

[Jeff]

The fate of our country is not riding on this poll, and neither is your fate, the fate of these forums or the fate of SCI research. Besides, last I checked, your tactics are more than holding their own with the posters here.

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[Maceyka]

So far it looks like most people agree or don't care about DA's "tactics". Even so, it doesn't matter. Stop trying to save the message boards from DA! Most of us can draw our own conclusions about what we read here "in spite of" what you or DA are posting! It's gettin old.

Maceyka

[Jeff]

as many people disagree with DA as those that agree, especially when you take DA's vote out of the poll. Although, I suppose he's allowed to agree with himself. And nowhere does it ask if they care, or not. Those are your words.

Dr. Young has made it abundantly clear that personal attacks on researchers tends to drive them from the field into other areas. Hence, my interest in the poll.

But thanks for sharing your view.

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[DA]

esc researchers are called baby killers, and cloning researchers are attacked to in major newspapers and tv etc. i refuse to believe someone goes to college, grad. school, and now in a recession is going to quit their jobs because i, DA on a small net forum, said they are footdragging and complacent and waste money on non-regenerative therapies and progressing at a need-a-time-lapse-camera pace. its not like im lying. look at jeffro's poll at the number of ppl wanting to leave the country.

[Jeff]

Our regulatory environment is such that it's a lot more expensive to do trials here. And regardless of cost it's easier to get IRB's to go along in other countries. But that is not the researchers' fault. They have the same frustrations we do.

I agree that lil ole DA is not going to get anyone to quit their job, but, if your posts are wrongfully interpreted as the attitude of the SCI Community as a whole it could discourage someone deciding which grant proposal to submit or which job to accept. You have no idea what researchers face. As a standup wheelchair salesman you should go easy on those who work hard in the lab. You have no idea how hard their job is.

Use some facts, DA.

How can you prove their heart is not in it? How can you prove they don't want to find a cure? You cannot.

I gave criticism of MP that maybe they overfocused on Schwann Cells. That is a definitely debatable topic with facts that can be pointed to. Your arguments are so harsh and so vague that they aren't even worthy of discussion.

You can be better than that, DA.

Why not give it a try?

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[Felps]

Living on hope, but the reality of it all is most of us will be dead before a cure is found, and if one is found during our life time, we will die from a heart attack during therapy. That is the sad truth. The cure seems now to rest on stem cells. Well that can be 10 or more years yet just for human trials. The jerry falwells will keep that under gov't control, so we will have to depend on foriegn gov'ts to save us from the depts of paralization. It is amazing, that the 250,000 (U.S. citizens paralyzed)number never seems to grow. Yet when I go to WAL*MART, it seems there is more every month. DA scream all you want. YOU EARNED THE RIGHT> THIS IS AMERICA> THEY CAN"T TAKE THAT AWAY FROM YOU> All we are are wheeling meal tickets for the greedy healthcare system. Everybody gets a piece of our ass. But, hey, dare if you get something, cause then there asking what are you doing with that> The real last christian was MOTHER THERESA- Lets see jerry falwell live with the poor. Being a christian is not just believing you are saved, and repenting your sins. Jesus wants you to die for your brother,your nieghbor, and to live for all of humanity - well I can't think of any more love for a stem cell to do.

[Felps]

I agree with DA, not strongly disagree

[Jeff]

No Felps, you and DA don't decide "the sad truth" for anyone but yourselves.

My life span is not an issue. Maybe yours is - I'm very sorry.

BTW, did you ever vote in Florida? http://sci.rutgers.edu/forum/images/smilies/smile.gif

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[robin]

I strongly disagree with DA, not agree

[DA]

what do you disagree with robin?

i believe proress is to slow, you disagree?
" researchers can do a better job, disagree?
" money is being wasted, disagree?


what is this poll about. jeff has made a fool out of all us. how can anyone vote on a poll based on, and i quote "whatever they think it means"?

[Jeff]

This poll is not about:

i believe proress is to slow, you disagree?
" researchers can do a better job, disagree?
" money is being wasted, disagree?


This poll is about, get ready, ready yet?, here it goes: "your tactics"

We've been disscussing your tactics at length so I'm sure everyone has a good idea what that means. Even your supporters, as tired of the dissension as they are, seem to understand perfectly what the poll is about.

How come you just don't get it? Your weak left brain?

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[DA]

no jeff this poll is about hatin. i understand it from blue and robin, but you of all people. when ever someone is sucessful and have it going on, there is always someone on the side hatin on that person. lets keep this about cure instead of hatin on others.

[zaziwe]

If there is any blame to be placed for the slow progress (debatable)in SCI Research, it lies at the feet of the SCI Community itself. Although there are many organizations, and individuals who work their asses off, and raise mucho $$$, the majority of us, including myself, do JACK.

If we want to be cured, we the crips must Unite, and FIGHT for the cure. If we took it upon ourselves to raise the money and enroll the general public in our cause, the researchers could concenrate on research.

Just like our country, and the world, has united to fight terrorism, we with CNS disorders need to unite, and fight our war for a cure.
If we each put as much energy as we could into furthering our cause, we could kick these chairs to the curb in a matter of years. It is up to us to make this happen, and we CAN do this.

Why don't we Unite?

[Jeff]

There is no national organization uniting us. And the "us" is far too few of the injured. This web site is the best we have but there are only 1000 registered users and as you can tell from this poll, we are divided.

We do have options on how to get involved. Sue enumerates them all the time. But they more often than not apply only to those self-starters who can motivate themselves and stick with something. We need leadership to unite us and objectives that all can participate in on our way to our ultimate goal.

Ranting and raving about the lazy, uncaring researchers just aint gonna help. Unfortunately, a number of people here believe it will. Fortunately, they have only one voice!

IMO, our chance for a cure rests with the great basic science of the US and the unregulated, aggressive application to humans by the rest of the world. I'm not pessimistic, at all. US companies might be forced to use animal stem cells but companies abroad are not. US companies might be forced to do grueling trials on individual therapies but companies abroad can do all the combinations they want. And they're doing them. They're spending some serious money, that money goes a lot further in those countries and their people have a lot worse life in the chair than us so they'll try anything. Our researchers need to partner with clinical facilities abroad and get those therapies going. And even if they don't those therapies will end up over there, anyway.

I think we'll have something in a couple years and I'll go anywhere to get it. And when we're all on 60 Minutes talking about the cure, lookout, there will definitely be a roll on DC by everyone in the chair demanding something be done to get the cure over here.

IMO.

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[Felps]

For all of us. Lets unite nationally and throughout the world and make money. Lets take the money away from the bastards who are making it from us. Lets creat a pharmacy, medical supplier, and a finacial center that benefits us. We create a research center to cure us. Imagine if we can unite MS and others. The money and power we will have. If you want something done "DO IT YOURSELF"

[Felps]

Setting something up would not be a problem. FEDX and UPS deliver everywhere, NEXT DAY . We have the internet. We have the customers. Most of all we have something in common, WE WANT TO WALK>

[Felps]

And some of have more insurance that PAY. AND PAY AND PAY AND PAY AND PAY> THEY KNOW IT< THEY KEEP RISING THE PRICE AND THEY KEEP PAYING>

[Felps]

Once we show the customer support, the vendors will supply us on consignment. EASY inventory. Not much cash to start.

[Felps]

We have 250,000 US customers already. 10000-12000 additonally a year. One medical supplier suppling a city.

[Felps]

AND we all want our freedom back. WE have to unite. WE HAVE TO FIGHT FOR OUR FREEDOM.


FREEDOM !! ! ! ! ! ! !

[Felps]

TO FIGHT FOR FREEDOM

[Jeff]

Felps, I agree with you 100% but you underestimate the task you are contemplating. Remember the CanDo failure?

I honestly think it could be done. In fact maybe I'll do it! Maybe I'll start selling catheters. With a Worldnet account I can sell up to six products for free. All the billing software comes with it! I'll pick the six most popular styles and sell the hell out of 'em. And as I get more customers, increase the number of products from there. I'll do it in my spare time paying myself only a small salary. All profits will go to research so I'll definitely corner the market. Soon, I'll have a big warehouse selling catheters to a quarter of a million Americans!

If you knew how many times I've contemplated this you'd be incredibly surprised. SOMEBODY could make this happen. I'm just not sure who.

~See you at the SCIWire-used-to-be-paralyzed Reunion http://www.stopstart.fsnet.co.uk/smilie/wavey.gif ~

[Sue Pendleton]

Enough of the DA polls. Totally useless information and with my short term memory I don't need junk clouding it up.

As for Felps, nice profile. Want to tell us what state you live in, where you work or how many hours, are you in school, etc. In other words, why aren't you out there creating a database of everyone with a SCI you meet on the web who has, at one time or another, said they think we need to organize. Then start organizing!

Jeff, well, you know you have a little time now. You're a computer type, right? How about offering to teach those who want to start databases or letter writing websites how to do them?

And anyone from Maryland who would be good for a well placed letter or two, could you drop me a note (DTXNEWS@aol.com). We need to up our $1 million a year research fund and the Maryland State Assembly isn't going to do it out of the goodness of their hearts. It takes letters from voters to convince them. And you don't need to know a ton of statistics to write a letter to a politician. Just a short, less than one page note that: 1) says what you want--I want the SCI Research Board Trust Fund amount increased; 2) states why: I'm tired of government assistance, the side effects of my disability are interferring with my work now, I want out of this chair so I can walk up on stage to get my diploma, etc.; and 4)requests an answer and thanks the person for their time in attending to this matter.

There is no reason why every person on this website cannot raise $1,000 in 2002 and get it to a laboratory that is doing SCI research. That right there is $1 million. With those who do more or states that get laws passed, it all adds up very quickly. But saying something needs done is a long way from doing it. For those with children this is a great way to teach how our government works, how to contribute to society by means other than paying taxes and mainly..that it is each of us that makes this planet a better place.

Lecture over.

[Longshot]

Jeff,or anyone else,why are we {the sci community}
divided

[Sue Pendleton]

Since this is heading towards fundraising I am going to close this thread and move the newer posts to that forum. Nothing against the poll it's just run it's course.

[This message was edited by Sue Pendleton on December 09, 2001 at 01:04 AM.]