What if we assembled a group...

[rustyreeves]

Remember back when the US Government assembled a group of its best and brightest to develope the nuclear bomb? Why couldn't something like that be done today for a cure? Put them together somewhere and let them brainstorm. One great idea after another could come out of it. Why couldn't we do that for the greater good of humanity? We did it for war.

Bill Gates could fund it...

Rusty

[Rick1]

"I believe that this nation should commit itself to achieving the goal, before this decade is out, of landing a man on the moon and returning him safely to the earth."

In 1961, with these 31 words, President Kennedy turned a dream into an engineering challenge that united the nation behind a heroic mission.

On July 20, 1969, NASA fulfilled the goal on time.

NASA already had been working for years on the requirements for a manned mission to the moon.

[Jeff]

Bill gates will not fund anything for spinal cord injury. His ego does not allow him to share a stage with Christopher Reeve. He was born a dweeb, grew up a geek, and now he's a rich loser who only donates to causes that won't allow the world to know who he really is. AIDS, education, women's issues....he won't take a stand on anything that would separate him from the crowd.

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

[Jeff]

And I was trying so hard......

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

[Scorpion]

Jeff, so why should Gates should fund SCI research? Why not education or AIDS? Who are you to say what someone does with their money?

Hell, I wish he'd fund SCI Research, but your accusation that he doesn't because he doesn't want to share a stage with Reeve is asinine. When did you talk with the man about his philanthropic intentions?

By the way, he's said he'll give away most of his fortune. If that's true, it'd be nice if some went to SCI research, but there are many important things that need money out there. The world doesn't revolve around those of us who are paralyzed.

~Rus

"We are not brave because we are free. We are free because we are brave." ~ Rich Ward (Stuck Mojo / Sick Speed)

[antiquity]

But we do have that hustler magazine guy, he's got lots of dough. If only he would....nah, that would be too good to be true.

[Jeff]

Now, we have yours, too.

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

[Rick1]

Opinions don't necessarily have to be based on anything, but those that are well thought out and factually based tend to be more relevant.

In addition to his love of computers and software, Bill Gates is very interested in cutting-edge bio-technology, and has made significant investments in a number of bio-tech companies. Philanthropy is also important to Gates and his wife, Melinda. They have established a foundation that focuses on global health and learning. The foundation currently has an asset base of $24 billion. For information on the Bill And Melinda Gates Foundation, check out the following link:

http://www.gatesfoundation.org/

[etexley]

It's clear that there are alot of methods going to trial for acute injuries. I think our most direct route to a cure for chronic injuries will be to establish a means to fund research into adjacent methods of treatment for chronic SCI using the techniques developed.

As has been said many times on this forum, for a company to take a therapy to trial requires investment. In order for a trial to succeed, the benefits received must at least match what the scientists predict, or the trial will not be considered successful. Chronic spinal cord injury has more complications that I can count. There are many, many pieces to the puzzle of "cure", not just repairing the cord at the site of injury. If a complication hinders a patient's recovery, the treatment itself may not be at fault...but the patient may not get better.

So let's take an example...macrophages. How can we, the benefactos of proven treatment methods help expedite the transition of Proneuron's treatment method from just acute to acute AND chronic SCI?

Eric Texley

[Jeff]

The responses were posted at the old SpineWire. SCI Research doesn't match the profile of the causes they are interested in funding. Of course, they turn around and donate to Cystic Fibrosis a month later. Whenever that kind of money is involved there are always politics behind it. I admire and respect Gates' philanthropy and I don't dispute the worthiness of his causes. But! SCI Research is at a critical stage and is severely underfunded. Neurological research will help so many people with a variety of conditions. In light of this I thought the response from the Gates Foundation was incredibly shallow. My opinion.

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

[bill j.]

A few weeks ago there was an article in the Wall Street Journal about Gates giving hundreds of millions of dollars to vaccinate children in underdeveloped countries. It was in interesting article because the Gates Foundation runs that medical programs sort of like Bill Gates runs his business. He wants results, and teams of accountants do follow-up work in making sure the money he has donated is doing what it is supposed to do and not being wasted or going into the pockets of corrupt people. He wants children vaccinated, he is not interested in making corrupt people rich or funding inefficient hospital and clinical operations. His auditors actually want to see the records showing the number of children vaccinated, and if a clinic can't produce those, they are likely to be cut out of future funding. Many people think of Gates as cold-hearted, but he has probably saved the lives of hundreds of thousands of children through his vaccination program.

We all think it is easy to give away money. But when one gives away hundreds of millions or billions, it is a difficult task to make sure the money is well-spent and not wasted. It takes a team of trusted and knowledgeable people, accountants and auditors, too.

Put yourself in Gates shoes - how would you give away a few billion dollars, just start writing out checks to people you don't even know? I think Gates wants to see results from his gifts. Perhaps someday he will take an interest in spinal cord injury and neurological diseases. Bill

[Jeff]

In 1989 the single gene responsible for the disease was discovered. In the mid-nineties researchers were able to successfully correct the disease in cultured tissues using gene therapy. A cure is at hand, depending solely upon developing a successful gene therapy strategy. Yet, the CF grant is not designed to further this cure, at all, IMO. This is a disease that affects only about 30,000 people in the US. Of course, if you're one of the 30,000, or a family member is, you'll take any research you can get. Life span for CF-sufferers have been increasing rapidly and it's a well understood phenomenon. It should be soon cured with the advent of liposome gene delivery techniques.

I originally defended Gates, somewhat, and his right to fund whatever he liked. After the CF gift I really felt that we should have at least gotten the reply that they would look into it further. Shutting the door that way was rather cold when so many people here in America stand to benefit.

Software sales to third world countries cannot be making MS a lot of money. American consumers and businesses have done much more to generate wealth for that company. Illegal copies of software are rampant in the third world. I bought a cd in the Philippines that had half a dozen MS programs on it for five bucks. It had all the keys and the programs installed fine.

Anyway, I'm disgruntled about their decision but I won't discuss it further. In this thread, anyway.

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

[Scorpion]

Good points, Bill.

~Rus

"We are not brave because we are free. We are free because we are brave." ~ Rich Ward (Stuck Mojo / Sick Speed)

[Wise Young]

Jeff,

The discovery of the cystic fibrosis gene was a real breakthrough for families who have the gene. It allowed for family counseling to prevent the disease. Because the cause of the disease is known, treatments are much better. Gene therapy, however, has not advanced to the point that it is possible to insert the correct gene into all the cells of the body. The recent fiasco with at the University of Pennsylvania and the almost complete stoppage of all clinical trials involving adenovirus inserted genes slowed progress in the field. Finally, the potential ban on all tranfers of genetic materials into an egg has made research into correcting the genetic deficit at the germ cell level difficult if not impossible.

The reason that cystic fibrosis received so much money was because the perception was the the field was close to a cure. Many people gave money not because there were so many people with cystic fibrosis but because they believed that the money would hasten an imminent cure.

I believe that money would come pouring into spinal cord injury research if it became clear to the public that a cure is imminent. I am not sure that a majority of the public believes that a cure will happen all that soon. Most people do believe that a cure will happen.

Wise.

[cheesecake]

During my last prgnacy I was tested for the CF gene, one of the first in this area to have the testing. I came up positive for the gene but one that impacted male fertility, digestion and lead to minor level CF with chronic bronchitis and digestive disorders. My husband tested negative but we were told that their could still be an impact on the child. My youngest son tested negative but we decided to test my older boy as he ahd major health issues that could not be identified. Now, most have been traced to the CF gene.
My brothers wife was expecting at the same time. She had a cousin die of CF during the childs teens. The testing allowed my brother and his wife to be proactive before the birth of their daughter. Knowledge allows for early treatment and better outcomes.
My family never had a case of identified CF, and I was the first patient at the Bethesda amnio center who was identified with the CF gene. While no CURE for CF has happened, the identification of the gene made a big difference in my families ability to appropriately treat our children. We know now, that my 9 year old will need too utilize alternate means of conception. While he is not old enough to be told now, when he is an adult, it will save him and his wife years of frustration.

May not meet your definition of a cure but to us it is invaluable.

[Jeff]

I don't begrudge the CF gift from the Gates Foundation. It just surprised me after they slammed the door in our faces. I thought they had a guideline for how they would give grants, which SCI didn't meet. That was a lie from the Gates Foundation because Cystic Fibrosis didn't meet the guideline, either. I don't like to compare worthiness of causes because every health problem can mean the whole world to the one who has it. But I don't respect the response from the Gates' and I am unimpressed with their explanation.

As I am a Microsoft shareholder, and as I have been developing information systems for Microsoft platforms for fifteen years, I do feel a bit betrayed. With billions of dollars at their disposal, already earmarked for philanthropy, saying they will give nothing is hard to understand.

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

[alan]

The problem with SCI is that it isn't fatal. As has been discussed elsewhere, we can live 50 years or more after an injury. Conditions that kill will attract more research dollars than those that don't.

[Wise Young]

Jeff and Alan, don't forget that everybody in the world, and their uncles, have asked the Gates Foundation for money. They turn down 99% of the requests, I am sure.

I am making a copy of this thread for the Fundraising Forum because this is getting out of the realm of "cure" research.

Wise.