Fund your own clinical trial

[kevinp]

Barbara - Thanks then I will be in touch with your son. I am looking for a Stem Cell Pioneer tshirt with the purple cells just like your logo on this site. I loved your slogan about the dog...You hit the nail on the head with that one. We should find a way to use that slogan.

Welcome Kevin thanks for the insight.... so true.

Jeanine I think the NIH is bunch of constipated bozo's. It's an agency that could be an asset to our country but instead it's waste.

I was asked to fill out a questionaire from the DNC about Obama and our country. You can only imagine what I told them!! At the end I asked to have Obama call me!

Thanks for the welcome Cynthia.

Jeanine, thanks for your and everyone's efforts here. This website is truly a beacon for those looking for support, hope and some answers. Started by 'pioneers' it just underscores the point that NO ONE is more motivated than the patient to get things done.

For my part, I think that even those who may not be able to "march" have a power that is under appreciated, but it is a power that is realized in numbers and cooperation and able to focused by the internet. This forum and others like it will come together to form a unified organized and well-funded voice that will have a lot more impact than any individual voice alone. I don't think the resources to do so would be impossible and I can only imagine what the effect might be of such an entity. Certainly more than individuals letters.. at least I would hope so. I have some contacts through my work that might help and everything starts with the idea.. my vision would be a global collaboration of patient and patient advocacy groups whose goal would be to accelerate the development and delivery of technologies to fight degenerative disease... of course COPD would be one of those that would stand to benefit.

This obviously needs a lot of thought.. but my brain is one thing that isn't falling apart as fast as the rest of me..

 

[barbara]

Kevinp - I think we should get a group started using our new Community feature. This would allow us to discuss in an easy format how to get groups to come together and to find out what groups are out there.

It is really inspiring to see how far this forum has come. Jeannine and I were totally alone when we returned from having stem cell treatment in 2007. Most people thought we were nuts and many thought we were trying to sell them something when we announced that the Stem Cell Pioneers forum was born. We were just lost, plain and simple and totally uneducated about what we had just done. Now, thanks to all of our great members and doctors, researchers, PhD's et all that help out (and some hard work), to me there is real hope in the air.

Getting large groups that advocate stem cell treatment and real cures to come together will give us the power that cannot be ignored. Millions of people are dying unnecessarily. I am amazed at how many aren't even aware of our plight. That's one reason for the junket to Senator Harkin - to put a face (actually it will be faces) on the problem.

 

[kevinp]

Kevinp - I think we should get a group started using our new Community feature. This would allow us to discuss in an easy format how to get groups to come together and to find out what groups are out there.

It is really inspiring to see how far this forum has come. Jeannine and I were totally alone when we returned from having stem cell treatment in 2007. Most people thought we were nuts and many thought we were trying to sell them something when we announced that the Stem Cell Pioneers forum was born. We were just lost, plain and simple and totally uneducated about what we had just done. Now, thanks to all of our great members and doctors, researchers, PhD's et all that help out (and some hard work), to me there is real hope in the air.

Getting large groups that advocate stem cell treatment and real cures to come together will give us the power that cannot be ignored. Millions of people are dying unnecessarily. I am amazed at how many aren't even aware of our plight. That's one reason for the junket to Senator Harkin - to put a face (actually it will be faces) on the problem.

Getting a group together to discuss the possibilities is a great idea. No time like the present. What would be really useful is a start on a list of the separate "patient advocacy groups" that have a reported interest in stem cells. There are the obvious ones like Michael J. Fox and Christopher Reeves Foundation, but there must be others, including usergroups on Google and Yahoo and other smaller groups. I'm afraid I'm more or less completely tied up with my PhD and other commitments at the moment, but I can help with some networking I think.

I would suggest connecting with Genetics Policy Institute, the people who put the World Stem Cell Conference in Baltimore on. It seems to me they would be an ideal "umbrella" organization because of their commitment I've seen with respect to patient advocacy and accelerating the development of cures globally. I have some contacts within their organization if you'd like to contact them.

 

[Jeannine]

Some of these groups have been contacted before. In fact, I received an email from Gov Schwarzeneger last year Posted on this forum if you do a search) as well as a response from Leeza Gibbons who is also involved in stem cell research. I wrote to the Michael J Fox foundation but never received a response.

We have been trying to get the word out for a couple of years now.

 

[barbara]

I would like to get the group set up on this forum and then get a list started of the other known groups so we can get an idea of what is out there. I think it is a good idea to work with a goal in mind of getting these groups to support ICMS because it is already focused on what we want - safe stem cell therapy availability now. We need the sheer volume of coming together as one loud voice. This may or may not be possible as some groups tend to be in existence in my opinion to continually fund raise, but I think there are enough advocates out there that we can consider their support a realistic goal.

If anyone has other ideas, let's hear them before we set up the group and name it something. If you have contacts, that would be great Kevinp. Jeannine does contact various groups/celebrities, but I am sure many of them need a real barrage of correspondence before they would pay attention.

 

[kevinp]

I would like to get the group set up on this forum and then get a list started of the other known groups so we can get an idea of what is out there. I think it is a good idea to work with a goal in mind of getting these groups to support ICMS because it is already focused on what we want - safe stem cell therapy availability now. We need the sheer volume of coming together as one loud voice. This may or may not be possible as some groups tend to be in existence in my opinion to continually fund raise, but I think there are enough advocates out there that we can consider their support a realistic goal.

If anyone has other ideas, let's hear them before we set up the group and name it something. If you have contacts, that would be great Kevinp. Jeannine does contact various groups/celebrities, but I am sure many of them need a real barrage of correspondence before they would pay attention.

Thanks Barbara and Jeanine,

I have to congratulate you both on the perseverance and foresight in setting up this site. It gives people who have been, and continue to be, shell shocked by increasingly bad news a place to find hope and understanding.

I have contacted Bernie Siegel about the power that I think is with the patient groups and their advocates and he is in complete agreement. I anticipate that we will see the various diseases support groups emerging on the internet coalescing into a more unified voice and it is with the leaders of these groups that the real potential for accelerating therapies lie. Supported by their memberships, I think an international awareness campaign could be initiated by working with established foundations. I tend to see that most established foundations are skeptical as to time frames and have developed an attitude that does not necessarily reflect the sense of urgency felt by their constituents. There are however some organizations like the Reeves Foundation which seem to be aggressively pursuing new therapies, including non-embryonic stem cell therapies such as those using "induced pluripotent stem cells" which are "embryonic stem cell equivalents" without the ethical controversy.

All we need is a way to focus the current desire and motivation.. that is going to be very difficult, but not nearly as difficult as dealing with COPD or other disabling and eventually terminal diseases.