Stem cells heal autoimmune hearing loss

Renee

New member
No releasing of results for a year or two

Just read the e-mail more closely and it states:

Important Facts for you to Consider



The treating center?s present experience with using the patient?s own bone marrow is limited, but has already shown that just about every patient treated with this new protocol (about 12 so far) has experienced significant improvement. As the treatment is new, the center will not be releasing actual results for at least a year or two, or possibly even longer.


I'm sorry, but that sounds skeptical to me. I'm anxious to hear back from another place, RNL Bio. They are doing the fat extractions Feb/ Mar this year and they told me they would have results in Sept. Sounds more reasonable.
 

Deaf123a

New member
I also got that in the email. They never attached the MedForm. I replied and still don't see the Medform. Also they don't mention the name of this mysterious center and a Google search shows nothing. My dad doubts a such center even exists. Since when is stem cells allowed in America? Also America is way behind on that technology. If any of you can find the name of this center or more information, post it here. If they are for real and I can verify their claims, ill go ahead for $9500.
 

barbara

Pioneer Founding member
I asked Dr. Centeno if he knew of this clinic in Florida and he did not. I will continue to try to get more information, but it seems strange that if this is legit that it is all so sort of secretive. I wouldn't bet the farm on it.
 

Deaf123a

New member
I asked Dr. Centeno if he knew of this clinic in Florida and he did not. I will continue to try to get more information, but it seems strange that if this is legit that it is all so sort of secretive. I wouldn't bet the farm on it.

Me and dad are skeptical of it's existance for several reasons. Unless it's legit and I visit that clinic myself and they can verify treating others, I am gonna keep waiting and perhaps consider Nepsis in Mexico in the near future.
 

Renee

New member
May 2010 Standford University Research

I just read this article dated May 2010, about Stefan Heller, who does a lot of reasearch in on hearing, and other drs on their recent discovery, "In the latest research at Stanford University, California, scientists perfected turning stem cells - blank cells which can turn into other cell types - into the delicate hairs found in the inner ear. ones."

Read more: http://www.dailymail.co.uk/health/article-1278160/Deafness-cure-breakthrough-scientists-create-tiny-ear-hairs-stem-cells.html?ito=feeds-newsxml#ixzz0p9LbFYxM


It's about time that they start looking in the states at adult stem cells instead of all this stupid embryonic research. no one wants that. Anyway, in this article...they say that it's "still another 10 years away"....well, until then, we will just watch the rest of the world make money and watch patients get healed using reasearch we don't have.
 

barbara

Pioneer Founding member
Unless Big Pharma can get its drug regimens to be involved in autologous stem cell therapy, we will continue to be behind the rest of the world. The U.S. government and its regulatory agencies are influenced by the big money that Big Pharma wields. Until there is a huge groundswell of citizens that are fed up with this, it will be business as usual in my opinion. I don't feel that it has anything to do with embryonic stem cells research at this point.
 

Deaf123a

New member
That's just sad. Also, lots of Americans believe stem cells are "snake oil" but we know stem cells works and it's available in other countries today!

Regarding the Florida stem cell center, I got the news. The 12 people who had their hearing improved, they were actually treated outside America for other conditions and the stem cells also improved their hearing. Stem cells can treat many conditions and if you have more than one condition, stem cells treats however many different conditions you have.

They can do bone marrow stem cells, but only using a simple method. They remove a small sample of your bone marrow, put it in a centrifuge then reinject the stem cell portion of the bone marrow thru a long tube that flows to your head. You are under general anesthesia for this. The idea is the stem cells in your head make their way to your cochlea and differentate into hair cells. They are not allowed to "expand" the small amount of stem cells into millions and they can't use other sources of stem cells.

6 people have signed up at $9500 each and they will begin treatment in September. It's an outpatient procedure and should the results be positive for those who signed up, I will be next. I am skeptical that any patient will see any measurable improvement due to the tiny amount of stem cells. Stupid anti-stem cell regulations in the Bush era caused America to be 10 years behind! I will wait 2010 out and see what 2011 brings. I plan to get stem cells soon and most likley not in America!
 

barbara

Pioneer Founding member
" They are not allowed to "expand" the small amount of stem cells into millions and they can't use other sources of stem cells."

"Stem cells can treat many conditions and if you have more than one condition, stem cells treats however many different conditions you have."

" Stupid anti-stem cell regulations in the Bush era caused America to be 10 years behind! I will wait 2010 out and see what 2011 brings. I plan to get stem cells soon and most likley not in America!"


I have a few comments on what you wrote. Why is an offshore clinic not allowed to expand the stem cells or are you talking about the clinic that will be doing the procedure in Florida?

I think the second comment needs clarifying as well. Stem cells will go to the most recent area of injury. There are some reports of people regaining hearing for example or getting rid of arthritic pain when they went for stem cell therapy for a completely different condition, but for the most part, cells are being targeted for specific areas. I have lung disease, so I would not be getting stem cell therapy that might help with the after effects of stroke for instance. I would invite any of our professionals that help with this forum to comment on this as their explanation is going to cover more ground than I can, but it is not as simple as getting an infusion of stem cells and getting a remake of all that ails a person. I will also submit this as a question for the next Ask the Doctor forum with Dr. Grossman.

Last, but not least, the Bush attack. Here is some history.


In 1973 a moratorium was placed on government funding for human embryo research. In 1988 a NIH panel voted 19 to 2 in favor of government funding. In 1990, Congress voted to override the moratorium on government funding of embryonic stem cell research, which was vetoed by President George Bush. President Clinton lifted the ban, but changed his mind the following year after public outcry. Congress banned federal funding in 1995. In 1998 DHHS Secretary Sullivan extended the moratorium. In 2000, President Bill Clinton allowed funding of research on cells derived from aborted human fetuses, but not from embryonic cells. On August 9, 2001, President George W. Bush announced his decision to allow Federal funding of research only on existing human embryonic stem cell lines created prior to his announcement. His concern was to not foster the continued destruction of living human embryos. In 2004, both houses of Congress have asked President George W. Bush to review his policy on embryonic stem cell research. President George W. Bush released a statement reiterating his moral qualms about creating human embryos to destroy them, and refused to reverse the federal policy banning government funding of ESC research (other than for ESC lines established before the funding ban).

Then President Obama delayed once again until we now finally have a policy that allows federal funding for embryonic stem cell research. It is imperative that the public understands this because the reason we are so far behind, in my opinion, has little to do with embryonic stem cell research policies.


Here is an article by Irv Weissman, considered by many to be one of the leading experts on stem cell therapy that may clear a few things up for readers.


BY ERIN MADISON ? TRIBUNE STAFF WRITER ? MAY 25, 2010
Stem cell research has advanced to the point where it will be used more and more widely to treat a variety of diseases from autoimmune diseases to cancer.

"We're at the stage where we're ready to take advantage of stem cell biology and move into therapies," said Irv Weissman during a lecture Monday night at the Cameron Auditorium at Benefis Health System.

Weissman grew up in Great Falls and got his first taste of research working as a high school student at the predecessor to McLaughlin Research Institute. Weissman is now director of the Institute for Stem Cell Biology and Regenerative Medicine at Stanford University School of Medicine. He also chairs McLaughlin's scientific advisory committee.

Cells are the organizing units of the body, Weissman explained. Stem cells are rare, but stand out from other cells because when they divide in two, one of the remaining cells is still a stem cell.

Stem cells are entirely responsible for the original generation of all body tissues and their maintenance throughout life. Stem cells are originally formed during fetal development but continue to regenerate tissue throughout a person's life.

"There are no new stem cells coming in," Weissman said. "You're living on the stem cells you have."

However stem cell transplants are revolutionizing medicine.

For example, blood-forming stem cells from a diabetes-resistant donor could be transplanted into someone with early juvenile diabetes. Because juvenile diabetes is a blood disease, rather than an insulin disease, new stem cells could cure it. And it would require only one transplant.

"If the transplant takes, it's one time for life," Weissman said.

Blood-forming stem cells also could be used to treat other autoimmune diseases, including lupus, multiple sclerosis, rheumatoid arthritis and ulcerative colitis.

It was long thought that any stem cell could form any type of tissue. For example, a blood-forming stem cell could be moved to the heart and it would become a heart tissue-forming stem cell. However, that's not the case.

"Once a stem cell is specified for a tissue, it can make that tissue and nothing else," Weissman said.


Muscle-forming stem cells could be used to regenerate muscle in someone with muscular dystrophy.

Brain-forming stem cells already have been used to treat six children in the United States who have Batten disease, which leads to blindness, balance issues, short-term memory loss and eventually death. They also can be used to treat people with spinal cord injuries.

Weissman plans to begin clinical trials for stem cell treatment for spinal cord injuries soon. The trials most likely will be done in a European country that has a national health service, he said. Negotiating with each patient's insurance company in the United States makes clinical trials very difficult.

Weissman also soon will be starting clinical trials using stem cell therapy to treat several cancers.

Another challenge to stem cell therapy is that pharmacy companies aren't interested in funding it. Drug companies prefer therapies in which people take a pill every day, he said.

"In America and everywhere else, drugs and therapies are commercialized," Weissman said.

Weissman warned the audience to be leery of companies, often in foreign countries, that will treat medical problems with stem cell therapy.

A sure sign of a fraudulent company is one that claims to have stem cells that will regenerate any type of tissue.

"That doesn't exist," he said.

Weissman heard of one young woman who traveled to the Dominican Republic to have a hole in her heart treated using stem cells from her bone marrow, which is impossible.

McLaughlin Research Institute, in conjunction with the Howard Hughes Medical Institute, which aims to enhance K-12 science education, hosts these types of lectures to foster critical thinking and increase support for science in public schools, said George Carlson, McLaughlin's director.

"We're trying to increase scientific literacy," he said.
 

Deaf123a

New member
"
I have a few comments on what you wrote. Why is an offshore clinic not allowed to expand the stem cells or are you talking about the clinic that will be doing the procedure in Florida?
Im talking about the Florida SC center. I wish they were allowed to expand the SC, it's my own adult SC and USA won't allow even that! When will Obama reverse the Bush ban? Also, when the ban gets reversed, does America have the technology to expand the SC?

Yes, the improvement in hearing was a "bonus" for those suffering other serious ailments. In my case, I am targeting my deafness specifically.
 

barbara

Pioneer Founding member
Obama did lift the restrictions on federal funding for embryonic stem cell research, however, he failed to include the old lines. This made for another delay but I believe that they have finally been included. That being said, you still seem to think Bush is causing the delay for you and everyone else getting adult stem cell therapy that is clinically relevant in this country. That isn't what is happening. If you want to put the blame somewhere, it is of my opinion and that of Irv Weissman if you read the article I posted, that it is Big Pharma that stands in the way. It is also the opinion of a lot of doctors, researchers, patients, non patients, my dogs, etc.
To have people perpetuating the myth that Bush banned stem cell therapy is not doing anyone any good. It's time to move forward and howl to your representatives and the FDA, join ICMS and get everyone you know to do the same.
 

Deaf123a

New member
Can't Obama pass a law giving stem cell centers in America the right to perform stem cells in the same way other countries are? You are saying big pharma makes stem cells illegal in America? When the ban gets reversed, does America have the technology to expand the SC?
 

barbara

Pioneer Founding member
Can't Obama pass a law giving stem cell centers in America the right to perform stem cells in the same way other countries are? You are saying big pharma makes stem cells illegal in America? When the ban gets reversed, does America have the technology to expand the SC?

It would be nice if it were that simple, but Big Pharma plays a huge part in how politicians act. They have so much political clout that there is no way in our culture of drugs from cradle to grave that they are going to allow themselves to be left out of the stem cell industry that could some day put them out of business or leave them with much less profit than they enjoy today. They are buying patents and companies and trying to get a pharmaceutical link to all stem cell therapy - be it drugs that will be taken for life to enhance your therapy, drugs to culture the stem cells, etc. Patents can also be bought to stifle technology as well, don't forget. They are not liking to be left out of the equation and since they so highly influence everything the FDA does, I doubt that the President would suddenly just state that doctors can start performing stem cell therapies the way they do in other countries. Our FDA is supposedly one that focuses on making sure that foods and drugs are safe for us, but this issue goes well beyond safety in my opinion. There are those out there fighting the good fight such as Dr. Centeno who has told the FDA in no uncertain terms that they have no regulatory authority to interfere in the practice of medicine, which is exactly what they are doing by saying our own stem cells are drugs. This is preposterous and we all know it. Until the population wakes up to this corruption and does something about it, don't plan on seeing stem cell therapy widely available in the U.S. for a long time.
As for the technology, many U.S. doctors and researchers work outside the U.S. right now. The reason is that there are less restrictions. Read what Irv Weissman wrote. He is taking his clinicals outside the U.S. for good reason.
Did you read the article I posted about it?
 

yorkere

New member
Article on Irv Weissman

Barbara:

Where is that article of yours regarding Irv Weissman located?

TIA!

Robert
 

barbara

Pioneer Founding member
By no means was I stating that Irv Weissman is a friend of offshore clinics and patients' freedom to have treatment, but it is ironic that even he, who is a major player, is taking clinicals elsewhere because of the enormous cost of doing them in the U.S., not just in dollars, but in success of approval.


From a previous post I made: (#28 in this thread)
Here is an article by Irv Weissman, considered by many to be one of the leading experts on stem cell therapy that may clear a few things up for readers.


BY ERIN MADISON ? TRIBUNE STAFF WRITER ? MAY 25, 2010
Stem cell research has advanced to the point where it will be used more and more widely to treat a variety of diseases from autoimmune diseases to cancer.

"We're at the stage where we're ready to take advantage of stem cell biology and move into therapies," said Irv Weissman during a lecture Monday night at the Cameron Auditorium at Benefis Health System.

Weissman grew up in Great Falls and got his first taste of research working as a high school student at the predecessor to McLaughlin Research Institute. Weissman is now director of the Institute for Stem Cell Biology and Regenerative Medicine at Stanford University School of Medicine. He also chairs McLaughlin's scientific advisory committee.

Cells are the organizing units of the body, Weissman explained. Stem cells are rare, but stand out from other cells because when they divide in two, one of the remaining cells is still a stem cell.

Stem cells are entirely responsible for the original generation of all body tissues and their maintenance throughout life. Stem cells are originally formed during fetal development but continue to regenerate tissue throughout a person's life.

"There are no new stem cells coming in," Weissman said. "You're living on the stem cells you have."

However stem cell transplants are revolutionizing medicine.

For example, blood-forming stem cells from a diabetes-resistant donor could be transplanted into someone with early juvenile diabetes. Because juvenile diabetes is a blood disease, rather than an insulin disease, new stem cells could cure it. And it would require only one transplant.

"If the transplant takes, it's one time for life," Weissman said.

Blood-forming stem cells also could be used to treat other autoimmune diseases, including lupus, multiple sclerosis, rheumatoid arthritis and ulcerative colitis.

It was long thought that any stem cell could form any type of tissue. For example, a blood-forming stem cell could be moved to the heart and it would become a heart tissue-forming stem cell. However, that's not the case.

"Once a stem cell is specified for a tissue, it can make that tissue and nothing else," Weissman said.


Muscle-forming stem cells could be used to regenerate muscle in someone with muscular dystrophy.

Brain-forming stem cells already have been used to treat six children in the United States who have Batten disease, which leads to blindness, balance issues, short-term memory loss and eventually death. They also can be used to treat people with spinal cord injuries.

Weissman plans to begin clinical trials for stem cell treatment for spinal cord injuries soon. The trials most likely will be done in a European country that has a national health service, he said. Negotiating with each patient's insurance company in the United States makes clinical trials very difficult.

Weissman also soon will be starting clinical trials using stem cell therapy to treat several cancers.

Another challenge to stem cell therapy is that pharmacy companies aren't interested in funding it. Drug companies prefer therapies in which people take a pill every day, he said.

"In America and everywhere else, drugs and therapies are commercialized," Weissman said.

Weissman warned the audience to be leery of companies, often in foreign countries, that will treat medical problems with stem cell therapy.

A sure sign of a fraudulent company is one that claims to have stem cells that will regenerate any type of tissue.

"That doesn't exist," he said.

Weissman heard of one young woman who traveled to the Dominican Republic to have a hole in her heart treated using stem cells from her bone marrow, which is impossible.

McLaughlin Research Institute, in conjunction with the Howard Hughes Medical Institute, which aims to enhance K-12 science education, hosts these types of lectures to foster critical thinking and increase support for science in public schools, said George Carlson, McLaughlin's director.

"We're trying to increase scientific literacy," he said.
 

barbara

Pioneer Founding member
Here is what Don Margolis had on his site about Irv Weissman:

WEISSMAN EXPOSED

Extracted from an article by Lisa M. Krieger
lkrieger@mercurynews.com
Posted: 05/22/2010 09:00:00 PM PDT
Updated: 05/23/2010 06:52:47 AM PDT

When a child dies of brain disease at Children's Hospital of Orange County, CA, Philip H. Schwartz meets with the parents, explains his research and asks them to donate their child's brain to his quest for a cure.

"These are not easy conversations to have," he said. "There are expectations by parents that if they allow us to do that to their child, it will serve a useful purpose."

But for three years, the cells derived from many of those children's brains have been suspended in limbo, frozen in Thermos bottles. The nonprofit Southern California hospital has shut down the research, intimidated by a patent claim from the Palo Alto biotech company StemCells. The company's co-founder is esteemed Stanford stem cell scientist Dr. Irving Weissman, one of the world's most passionate advocates for giving scientists access to a field entangled by politics, ethics ? and now money.

UC San Francisco and Stanford University require no license from academics to use their patent inventions and materials for noncommercial research purposes, according to Joel Kirschbaum of UCSF's Office of Technology Management and Katharine Ku of Stanford's Office of Technology Licensing. "Behavior like this is repulsive and unacceptable, and the leadership of the company should be called to task,'' said Dan Ravicher, executive director of the Public Patent Foundation, a nonprofit group that urges limits on patent protections in life sciences.

John Simpson of the Los Angeles-based Consumer Watchdog, who is closely watching the case, called it "an egregious assertion of overreaching patent rights. Even if StemCells Inc. can technically assert the patent, I think it is wrongheaded for them to do it. You don't want to freeze that sort of research."

END OF EXTRACT

Editor?s Note: What Mr. Ravicher and Mr. Simpson do not know is that Weissman thinks of himself as God, and for good reason! He has brought perhaps a billion or more into Stanford?s overstuffed coffers with his lies about stem cells. He knows that no scientist or doctor who wishes to remain as such would dare criticize him, given that he controls through his billionaire bosses every corrupt major newspaper in America, starting with the Washington Post and New York Times.

Earlier this year he embarrassed ISSCR, the puppet stem cell organization he controls, by attacking adult stem cells being stored from umbilical cords. His underlings actually reversed his lies this time---you can bet THAT won?t happen again. Those underlings do not know what Weissman knows, that which drives his every action: The ONLY reason ISSCR exists is to keep adult stem cells away from those who need them. When already-proven corrupt CBS 60minutes can be so easily convinced to lie a dozen times in one broadcast, he really is God!
 

stemcelldeaf

New member
Just read the e-mail more closely and it states:

Important Facts for you to Consider



The treating center?s present experience with using the patient?s own bone marrow is limited, but has already shown that just about every patient treated with this new protocol (about 12 so far) has experienced significant improvement. As the treatment is new, the center will not be releasing actual results for at least a year or two, or possibly even longer.


I'm sorry, but that sounds skeptical to me. I'm anxious to hear back from another place, RNL Bio. They are doing the fat extractions Feb/ Mar this year and they told me they would have results in Sept. Sounds more reasonable.
Any one has update from RNL Bio?
 

Renee

New member
Reply from RNL bio

No response. i have text'd Jin Hong at RNL bio AND sent him an email asking if they have updates on the 6 patients they are treating for hearing loss. have not heard back from him, which is unusual. Usually he replies within a week. Here are the phone #'s and email if you want to give it a try yourself. Let me know if you hear from him.

Jin Hong, PHd
Tel 1-202-595-1300 x2
Dir 1-202-595-1314
Cel 1-301-661-2279
Fax 1-301-515-5515
hongjh@rnl.co.kr

Good luck!
 

Renee

New member
RNL Bio

OOOps. Checked my numbers I gave you. all are correct except the fax. Should be:
1-301-515-5115
 

Renee

New member
Latest from RNL Bio

Someone asked if I've heard back from RNL Bio. Jin Hong just replied yesterday, 7/13/10:
Hi Renee,

One patient with tinnitus not hearing loss received stem cells in early May.
We will follow him up for the next a few months. Two minor patients traveled Japan for the stem cell therapy. One finished injections and the other will start soon. For these kids, they have had hearing loss at birth. We didn't recommend stem cells for them but the families wanted to try it. Other two adult patients with hearing loss will travel to Japan in Aug or Sep. The result will be available after the end of this year.

Thanks,

Jin
 

stemcelldeaf

New member
Below is the response from RNL I just got:

One patient with tinnitus not hearing loss has finished stem cell treatment, which is different category but still too early to be effective. The other patient with hearing loss just arrived in Japan. Other two are planning to go to Japan in August.



Someone asked if I've heard back from RNL Bio. Jin Hong just replied yesterday, 7/13/10:
Hi Renee,

One patient with tinnitus not hearing loss received stem cells in early May.
We will follow him up for the next a few months. Two minor patients traveled Japan for the stem cell therapy. One finished injections and the other will start soon. For these kids, they have had hearing loss at birth. We didn't recommend stem cells for them but the families wanted to try it. Other two adult patients with hearing loss will travel to Japan in Aug or Sep. The result will be available after the end of this year.

Thanks,

Jin
 
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