Fund your own clinical trial

[zee]

As patients, our ability to influence research would probably be enhanced if we actually funded clinical trials. This may not be as daunting as it seems.

You can raise money by allowing businesses to advertise on your car. Compensation varies between $300-$700. Two companies were mentioned on Yahoo Finance that may offer opportunities. Below are the links to the companies. I don't know if these advertising agents are reputable, but don't feel there is much too loose by trying them out.

Driven Media
Earn $300-$500/mo
Insurance checked
http://drivenmediaonline.com/dm_process.htm


Free Car
Earn $700-$900/mo
http://www.myfreecar.com/

Both of these companies were mentioned in Yahoo Finance News yesterday
http://finance.yahoo.com/family-home/article/107476/make-money-by-simply-driving-your-car.html

I have suggested to Barbara that another website be created and a trust fund be established for the purpose of funding research. Potentially this would accelerate the process of getting new therapeutics into the market place. Is there any interest in this? If so, please don't send me a private message and post your comments here.........

Zee

 

[SammyJo]

Yes - patients can fund research!

Yes! This can work!

I organized a fund raise for trials of low dose naltrexone in 2006. It is a generic med that big pharma won't investigate due to lack of profit potential. Patients contributed over the net, and we had one fund raiser in CA. It took 14 months, but once we had raised $25,000 UCSF stepped forward with a small pilot trial of LDN for MS with 80 patients (publication pending).

This started a trend. Stanford has started LDN trials for fibromyalgia and received donations from patients. Penn State, that discovered the immune stabilizing properties of LDN 20+ years ago, has this year received $50k from and MS patient and $75k from a Parkinson's patient.

For my fund raise, I partnered with an MS non-profit so that was taken care of, you can seek out a sympathetic umbrella non-profit to save time. Details on the event and a press release are at http://LDNers.org (scroll down front page).

So I have been using LDN since Feb 2004, went off all the MS meds (that were killing me). Experienced fantastic recovery that got me out of a power chair, and have been stable since. This is a great way to delay progression of any autoimmune disorder, PD and many cancers while you research stem cells, which is what I am investigating to repair damaged CNS. And it is cheap, about $30/mo. Does require a prescription, but we share doctor lists to help find someone in your area.

Congratulations to the Stem Cell Pioneers, it is patients taking charge of their own fate that will rescue us from the grip of the profit-only pharma/medical industrial complex.

SammyJo
http://LDNers.org

 

[zee]

Fund your own clinical trial is a reality

From my perspective, patient funded clinical research is the only way to go. I have setup a non-profit corporation and an account with Fidelity Investments. Although we are not funded right now, I am working on getting a few things going. I only mentioned the advertise on your own car because this is something painless that every patient on this website could do today. I have a couple of other projects that I am trying to put together before school starts. If Barbara and Jeannine are open to it, I was thinking that one of them and one other patient from the forum could both sign the checks, while the rest of us work on things like calling investigators, and looking for meaningful research topics, etc.

Typically investigators are paid about $40,000 from big pharma for each clinical arm, and each research assistant also is paid that much as well. That appears to be the going rate. What I am trying to point out is that funding a clinical trial is well within a patients power and ability -- even if you don't have any money. The combined efforts of a multitude of people can make this happen. The more people that get involved, the easier it is.

I mentioned the car advertising so that people realize that you can raise large amounts of money for research and you can start today. It is easier to get money from manufacturing, or buying and selling something, than asking people to donate. I have a couple of projects that I am working on, but only have about 30 days to do it before school starts. It isn't too late to make it happen.

Patient funded research has the potential to be more targeted to our needs. With such a staggering number of people that are flopping over from lung problems, you would think that a more concentrated effort would be going on in the arena of lung repair. There are lots of therapeutic targets that are going unexploited. But lungs aren't the only problem. Yesterday I came across someone who is looking for a liver. This person got Hepatitis B 25 years ago. I suggested that he put his name on all of the registries because this would make it easier to find a liver. The major metropolitan areas are usually more difficult to get organs from. Also, I referred him to a Doctor at Imperial College in England. Imperial college has published studies on liver regeneration. In 2006, they had a 60% success rate after a Phase I clinical trial on liver repair. I only mention this experience to point out what an emergent need there is in society.

Two days ago, I met one of my friends in Palo Alto who has heart problems. We were both talking about this website. He said oh you too know Barbara. And I said yes I do. I know this individual from a Veggie Potluck that I attend. I usually only go during the summer time because I am in the classroom the rest of the year. He was thinking of going to Germany to have some work on his heart, but it is really hard on him to go such a long distance. Not only to mention the huge expense of getting over there. I did point out that there are travel networks you can join that offer free accommodation. Many hospitals have some type of low cost accommodation setup for transplant patients.

I would much appreciate people sharing their experiences with car advertising. I signed up for both programs. I haven't heard anyone as of yet, but this is a good first start. I plan on donating funds from the car advertising to the trust fund for lung repair. I think almost any of the research areas that people have posted on here are reasonable areas to work on. Although my immediate interest is lungs, there is no reason different accounts couldn't be established for the different areas of the body that people have an interest in.

Well this being said, I hope people will post their experiences on here with the car advertising.

 

[barbara]

If we can get a good response Zee, you can count me in. We can establish a fund as mentioned, but it takes participation to do large scale fund raising, not just a few of us. I do like the idea of partnering that Sammy Jo mentioned as well. Let us know if you hear from the car companies.

 

[Jeannine]

As long as my health holds up you can count me in.

Just let me know what I can do.

 

[SammyJo]

Sponsorship

Sponsorship is the most efficicient way to go, supplemented by community donations. Yes, sponsorship entails special interest, but we ALL should have a special interest in seeing this life saving technique advanced quickly. Be it patients, researchers or pratcitioners, healthy or ill, this behoves all of us.

I just got started on spreading the word for International LDN Awareness Week, have there been any Stem Cell Therapy awareness effort?

 

[barbara]

I am not sure what you mean about stem cell awareness effort. I spend endless hours everyday trying to get the word out and I know others do as well. ICMS is devoted to making the public aware of safe stem cell therapy and to fight for the legalization of it in the U.S. This forum is dedicated to getting the word out as well.

 

[SammyJo]

Clarification

Yes, I'm aware of the impressive effort you are making to spread SC awareness - and I'm greatful to have found your info!

Sorry I was unclear, I meant a targeted "Awareness" Day or Week event, that is concentrated around a conference or other events across the country, that can also be used as a fund raiser.

Here's one, outside the US of course, Great Britan http://stemcellaware.com/
Manchester Stem Cell Awareness Rally Draws 100+ Participants

I'll keep my eyes open for others.

 

[barbara]

I was in no way intending to toot my own horn, I just didn't understand what you were saying. I was invited to a stem cell awareness rally a while back which turned out to be not much more than a sales pitch for getting treatment in China. I would love to see a real awareness day designated that had nothing commercial attached to it whatsoever. Maybe, that should become a project for ICMS as I think it's a great idea.

 

[SammyJo]

http://stemcellaware.com/

This looks like a non-commercial patient based blog documenting stem cell awareness raising events around the world. There are blog posts on the following events:


First U.K. Stem Cell Awareness Rally to Take Place in Manchester, England on August 9th, 2009

Missouri Stem Cell Awareness Event August 16th, 2009

Denver Stem Cell Awareness Rally Great Success! June 25th, 2009

 

[barbara]

I went to the rally in Denver. It was somewhat of a sales pitch to get stem cell therapy in China. Disappointing in my opinion, although it did give some people hope that were there with children with major vision problems. There were some kids there that had been treated for similar conditions in China successfully, but I would not call it a stem cell awareness rally on the whole as there was little discussion of anything but treatment in China.

 

[kevinp]

Hi..

I'm involved in regenerative medicine research and just attended the World Stem Cell Summit in Baltimore.

http://www.worldstemcellsummit.com

where I was both encouraged and discouraged about the progress of stem cell therapies.

I have been working to raise the level of awareness of the potential of stem cell therapies in my hometown by helping organize events with the help of groups interested in commercialization of technologies.

http://www.abctech.ca/event-registration

It is clear to me that the power to accelerate the development of therapies and cures is with the patients and their families and caregivers.

Although I am very passionate about the technologies and their potential, as a recently diagnosed COPD, I am even more acutely aware of the sense of urgency patients feel. There is reason for hope and optimism, especially with the power that the internet provides groups to self-organize.

Have a look at the events above.. I will try to keep people posted with developments and hopefully there will come new ideas and resources that will help harness the energy in the motivation of those suffering and those who care about them, to help themselves.

 

[barbara]

Kevin - Welcome to the forum. I would love to have you expand a bit more on the Baltimore meeting since you attended. How are you involved in research? I agree that the power is with the patients at this point and our doctors who really care about our lives. Have you joined the International Cell Medicine Society (ICMS) yet? This is a grassroots effort started by Dr. Chris Centeno of Regenexx to make safe stem cell treatment a reality. www.safestemcells.org is where to join. For doctors www.stemcelldocs.org You may have noticed that we are looking for volunteers to meet with Senator Harkin. Do you live in the Baltimore area? If so, this might be a great opportunity for you to help with the awareness you are mentioning. If you don't live in the area, a non profit group will pick up the cost of airfare for those that volunteer to help out. We have a complete forum for ICMS and you can read more about it there. When Dr. Centeno started ICMS, he was not aware of the millions of people that suffer from terminal and chronic diseases that may benefit from stem cell therapy. Through this forum he found out just how many are affected, The meeting with Senator Harkin is to enlighten the Senator about terminal patients and how safe stem cell treatment must be brought to the fore NOW, not years down the road. Terminal patients don't have the luxury of the long wait.

We also have a new Blog feature and a Social Networking feature. I invite you to use those as well. I look forward to hearing more from you.

 

[kevinp]

Kevin - Welcome to the forum. I would love to have you expand a bit more on the Baltimore meeting since you attended.

There isn't much to tell except to reaffirm that we are no longer in Kansas Toto when it comes to the potential of stem cell therapies. The major blockage is that healthy people are in charge of their development and more concerned with money than with getting them done. I listened to a lot of "business development", "commercialization" and "intellectual property" discussions which from the patient point of view sound like the ravings of a lunatic when you put them up against the real fact that people are dying horribly everyday from degenerative disease. I came away with the feeling that there MUST be a better way.. and that "that way" will only be found in the minimum amount of time by people who are more interested in the result than slicing off a bit of profit with each step.

How are you involved in research?

I am doing a PhD in the ability of nanocrystallline silver and gold alloys to accelerate wound healing by dramatically dampening inflammation. It seems a bit ironic that dampening inflammation is very much what COPD is about.

I agree that the power is with the patients at this point and our doctors who really care about our lives. Have you joined the International Cell Medicine Society (ICMS) yet? This is a grassroots effort started by Dr. Chris Centeno of Regenexx to make safe stem cell treatment a reality. www.safestemcells.org is where to join. For doctors www.stemcelldocs.org

Not yet.. but I intend to become familiar with anything anyone thinks is pertinent.

You may have noticed that we are looking for volunteers to meet with Senator Harkin. Do you live in the Baltimore area? If so, this might be a great opportunity for you to help with the awareness you are mentioning. If you don't live in the area, a non profit group will pick up the cost of airfare for those that volunteer to help out. We have a complete forum for ICMS and you can read more about it there.

I am a Canadian actually, living in Edmonton, Alberta although I have been doing a lot of traveling recently to various conferences.

When Dr. Centeno started ICMS, he was not aware of the millions of people that suffer from terminal and chronic diseases that may benefit from stem cell therapy. Through this forum he found out just how many are affected, The meeting with Senator Harkin is to enlighten the Senator about terminal patients and how safe stem cell treatment must be brought to the fore NOW, not years down the road. Terminal patients don't have the luxury of the long wait.

He definitely sounds like someone who is committed to the result that all those facing the wonders of medical ignorance are interested in.

We also have a new Blog feature and a Social Networking feature. I invite you to use those as well. I look forward to hearing more from you.

I will definitely be contributing as much as I am able. For the past several years I have been involved in promoting the idea that new technologies will be able treat and cure many age-related conditions and chronic degenerative disease. I am a cancer survivor so I understand what an acute terminal death sentence is, I am just as unenthusiastic about a longer and slower decline. The one thing that is ABSOLUTELY CLEAR to me now, after dealing with researchers, politicians, health system and all the other communities involved is that we are truly fighting for our lives. I was once one of the more-or-less healthy.. and that perspective, no matter how loving or caring, just will not get the job done. It is absolutely imperative that patients all over the world self-organize and different disease groups associate to become a united voice demanding that the resources of the societies which they have contributed are directed towards developing the technologies that will allow them to continue to do so.

Any how.. as I have indeed been working as a volunteer for a number of organizations over the past few years, I know how essential they are, but I am just as aware now that groups need to step up and fund what is in their best interests. What is missing is the mechanism and the resources to "get it started"... but it will come. It must.

 

[Jeannine]

Kevin

We started this forum for the reasons you stated and are very much committed to helping ICMS gain visibility and acceptance to be able to treat people with adult stem cells.

The hardest thing is most of us are too ill to get out there and march or go to Washington so most of our work needs to be done the way we are doing it.

On TV this past week I saw some of the most useless research projects awarded grants by the NIH. One example: $246,000 on research involving Mongolian women with drinking problems. Outrageous

 

[Cynthia]

T-shirts

I want to know if we can make & sell SCP t-shirts? With the SCPioneers logo as is.

If that turns out to be to expensive we can do bumper stickers or window stickers or those rubber wrist bands that everyone wears now for every cause and then some.

What do you think?

 

[Jeannine]

Cynthia

We actually sell the t-shirts on our seachange website.

http://www.seachangeforlife.com/category_s/23.htm

 

[barbara]

Yes, we can and do sell t-shirts, caps, jackets, thongs, tablecloths, dog coats, - you name it - with the logo or anything else you want printed on the item. Let us know what your plan is. It might be nice to have the people who go to Washington D.C. wear a shirt with some kind of stem cell type message on it. Thoughts anyone? I have two t-shirts myself that help to send the message out. I should get the doggies decked out next. That would really grab attention. Dogs are way ahead of us in the U.S. as far as availability of stem cell treatment for them. I could have something printed such as "My dog can get stem cell treatment in the U.S., but I can't - Support stem cell treatment for humans too,"

 

[barbara]

We have used the SeaChange site to sell t-shirts previously. As I mentioned, we now have the capability to customize all kinds of clothing and put anything suitable on it to get the message across. We can get better prices as well if we order more than one shirt at a time. You can also customize your own shirt at this site www.goonaticwear.com My son, who gave us this forum, owns Goonaticwear and he is a great advocate of stem cell treatment and research. He is always willing to help in any way he can.

 

[Cynthia]

Tshirts it is!

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!