I am getting a lot of private messages and e-mails from people that are confused about what is going on as far as reliable sources for treatment information. I would once again like to clarify what I know. Feel free to add to this if you have additional information.
ISSCR - International Society for Stem Cell Research - This group has some Big Pharma ties. It is basically a group that was formed of stem cell professionals who would like to see international guidelines (and even regulation potentially) for stem cell therapy. They are like any other group that forms - they have a mutual interest and have formed a group to further that interest. They have no actual power to enforce anything.
RSCI - Repair Stem Cell Institute - This is a private individual's (Don Margolis) company that acts much like travel agents used to. If you want someone to do your legwork for you and hook you up with the doctors and clinics he has chosen to work with, he will do it. He does not work with all clinics and you will only be directed to one of the ones that he does work with. This is not an independent non profit company or website, but you may find that you prefer working with a stem cell therapy booking agent. You may also be able to negotiate a lower rate on your own so that's another consideration.
ICMS - International Cell Medicine Society - This is a grassroots effort started by Dr. Chris Centeno of Regenexx. I am very active in this group which is working towards getting adult stem cell therapy legalized in the U.S. using guidelines that the group has written. It is non profit and independent of any clinic or doctor, however, doctor members who wish to participate must agree to the guidelines and the patient registry that will be part of the ICMS standards. The hope is to have a list of participating doctors so that patients can know which ones have pledged to follow safe stem cell practices.
Stem Cell Pioneer forum - This forum is for the discussion of all types of stem cells and it also provides support for those thinking about getting treatment or those that have already had treatment. We do not endorse any company or doctor, but try to provide resources to people who ask so that they may do their own research. We also try to alert members to any clinics or doctors that seem to not have a patient's best interests in mind. Stem cell therapy and research involves a lot of money and sadly there are those that take advantage of it. Do not think for one second that just because you read about a company or research project on the internet that it is a valid one. We will continue to follow the investigative reporters who are writing about stem cell research scams as this is one reason that cures are so elusive. The forum is also working towards trying to get more interest in clinical trials using stem cells. Our main thrust however, is to provide hope for those where none existed before and to make our voices heard. We do not receive compensation from anyone. Our only source of income for the forum is our webstore at www.seachangeforlife.com
Foundations and non profits - Some foundations and non profits are simply taking in the money in my opinion. Just because a celebrity lends their name to a cause, does not mean that donations are being used to do meaningful research or seek a cure. Some groups are continually asking for money and yet where are the results? I don't include all groups, but there are some definite rip offs going on out there and one needs to be aware of this. I receive e-mails that question why celebrities that have diseases do not go somewhere for stem cell therapy if it is legitimate therapy. I believe that many of them do have treatment. There is also a type of underground going on in this country where one can receive stem cell treatment. Interesting? You bet it is. One member told me that the Cleveland Clinic actually was trying to set something up for her using a doctor in a neighboring state.
You should also question non profit sites that advertise for profit sites within their website. This is a strange combination for sure and not one that lends itself to credibility if you ask me. We had an example of this just a couple of days ago from an Australian non profit group that really smelled bad to me.
NIH - National Institute of Health - According to researchers that I have contact with, the NIH likes to play it safe, funding only those projects with pretty much a guaranteed success rate to please Congress. I think lately our forum members have seen this first hand. A prime example is the recent story of the funding of close to 4 million dollars by the NIH for a study that was 10 years old involving exercise and COPD.
Stem Cell Advance Treatment Protocol - This is an actual protocol that will be reviewed by an Investigational Review Board. Results will be published and presented hopefully at a major stem cell meeting this winter. The protocol is conducted by a researcher. The cost of the protocol is to cover the product and the researcher's supplies. Jeannine and I do the paperwork such as sending out the consent forms, questionnaires. I do the shipping of the product. We have no input as to what the researcher and the participant discuss. Neither the researcher nor the participant know who each other are as the participants use only numbers when communicating and the researcher is known as SeaChange consultant. There is nothing unique about this method at all.
I hope this helps clear up a few things for the new members especially. It can be confusing out there for sure. Stem cell therapy is in its infancy and there are those that will take advantage, but there are also some very dedicated and caring individuals out there wanting to help us improve our lives.
ISSCR - International Society for Stem Cell Research - This group has some Big Pharma ties. It is basically a group that was formed of stem cell professionals who would like to see international guidelines (and even regulation potentially) for stem cell therapy. They are like any other group that forms - they have a mutual interest and have formed a group to further that interest. They have no actual power to enforce anything.
RSCI - Repair Stem Cell Institute - This is a private individual's (Don Margolis) company that acts much like travel agents used to. If you want someone to do your legwork for you and hook you up with the doctors and clinics he has chosen to work with, he will do it. He does not work with all clinics and you will only be directed to one of the ones that he does work with. This is not an independent non profit company or website, but you may find that you prefer working with a stem cell therapy booking agent. You may also be able to negotiate a lower rate on your own so that's another consideration.
ICMS - International Cell Medicine Society - This is a grassroots effort started by Dr. Chris Centeno of Regenexx. I am very active in this group which is working towards getting adult stem cell therapy legalized in the U.S. using guidelines that the group has written. It is non profit and independent of any clinic or doctor, however, doctor members who wish to participate must agree to the guidelines and the patient registry that will be part of the ICMS standards. The hope is to have a list of participating doctors so that patients can know which ones have pledged to follow safe stem cell practices.
Stem Cell Pioneer forum - This forum is for the discussion of all types of stem cells and it also provides support for those thinking about getting treatment or those that have already had treatment. We do not endorse any company or doctor, but try to provide resources to people who ask so that they may do their own research. We also try to alert members to any clinics or doctors that seem to not have a patient's best interests in mind. Stem cell therapy and research involves a lot of money and sadly there are those that take advantage of it. Do not think for one second that just because you read about a company or research project on the internet that it is a valid one. We will continue to follow the investigative reporters who are writing about stem cell research scams as this is one reason that cures are so elusive. The forum is also working towards trying to get more interest in clinical trials using stem cells. Our main thrust however, is to provide hope for those where none existed before and to make our voices heard. We do not receive compensation from anyone. Our only source of income for the forum is our webstore at www.seachangeforlife.com
Foundations and non profits - Some foundations and non profits are simply taking in the money in my opinion. Just because a celebrity lends their name to a cause, does not mean that donations are being used to do meaningful research or seek a cure. Some groups are continually asking for money and yet where are the results? I don't include all groups, but there are some definite rip offs going on out there and one needs to be aware of this. I receive e-mails that question why celebrities that have diseases do not go somewhere for stem cell therapy if it is legitimate therapy. I believe that many of them do have treatment. There is also a type of underground going on in this country where one can receive stem cell treatment. Interesting? You bet it is. One member told me that the Cleveland Clinic actually was trying to set something up for her using a doctor in a neighboring state.
You should also question non profit sites that advertise for profit sites within their website. This is a strange combination for sure and not one that lends itself to credibility if you ask me. We had an example of this just a couple of days ago from an Australian non profit group that really smelled bad to me.
NIH - National Institute of Health - According to researchers that I have contact with, the NIH likes to play it safe, funding only those projects with pretty much a guaranteed success rate to please Congress. I think lately our forum members have seen this first hand. A prime example is the recent story of the funding of close to 4 million dollars by the NIH for a study that was 10 years old involving exercise and COPD.
Stem Cell Advance Treatment Protocol - This is an actual protocol that will be reviewed by an Investigational Review Board. Results will be published and presented hopefully at a major stem cell meeting this winter. The protocol is conducted by a researcher. The cost of the protocol is to cover the product and the researcher's supplies. Jeannine and I do the paperwork such as sending out the consent forms, questionnaires. I do the shipping of the product. We have no input as to what the researcher and the participant discuss. Neither the researcher nor the participant know who each other are as the participants use only numbers when communicating and the researcher is known as SeaChange consultant. There is nothing unique about this method at all.
I hope this helps clear up a few things for the new members especially. It can be confusing out there for sure. Stem cell therapy is in its infancy and there are those that will take advantage, but there are also some very dedicated and caring individuals out there wanting to help us improve our lives.