The Don Margolis Blog

I wanted to follow up on my post last week on storing a baby's umbilical cord blood. I noted that Newsweek ran a big article called "When Medicine Meets Marketing -The business of storing umbilical-cord blood is growing. Is salesmanship outpacing science?"

The article takes a Umbilical Cord Blood storing company called Cord Blood Registry (CBR) to task saying that it is a long shot that the stem cells from the cord blood would ultimately be needed and used AND if on the slight chance they were used, the author implied that it was doubtful that the stem cells would work and that CBR was taking advantage of parent's hope and faith.

The author, Mary Carmichael, used Dallas Hextell as an example. Dallas, suffering from Cerebral Palsy was treated for his condition with his own cord blood stem cells in a trial at Duke University by Dr. Kurtzberg. Dallas' parents have gone on the record saying that the stem cell treatment have helped him tremendously, but the author casts doubt on this saying that there is no proof that it worked. I have documented the cases of Dallas Hextell, Chloe Levine, Maia Friedlander, and John Centrello in my blog- if you read all of these stories, you will believe and this is a case of parents know best.

Don't take it from me- the general public let the author have it in the comments section to the article in question coming to the defense of the Cord Blood Storage business and the stem cell therapy in general:

Chloe Levine's mother responded first:

Posted By: cbrmom1 @ 12/15/2008 10:35:40 PM

It is so very clear that the person who wrote this article, number one does not have her facts even close to the truth and most importantaly is not a mother...
My daughter Chloe recieved a cord blood stem cell reinfusion in May of this year to reverse the effects of Cerebral Palsy. Todate, she is running, jumping, talking, can reach up with two hands to give me a hug....ALL of which was impossible before reinfusion. If you want to see the proof for yourself please visit www.youtube.com/cbrmom1 and watch the before and after videos. Yes, people with CP will improve over time, but they do not improve over 75% in 5 months.
I really feel that this article is a desperate attempt to meet a writers deadline....you should be ashamed of yourself for writting such a vicious, false article.

Since this is the holiday season, we are all in the spirit of giving.  What can be a better gift to give than  to give somebody life?  That is what we all can possibly do if we become a bone marrow donor.

Most often it is Leukemia and Lymphoma patients who are in need of a stem cell bone marrow transplant to save their life.  Take for example the case of  Joel Carter :

Carter, 56, said he would not have lived to see his grandson's birth on April 5 this year if it were not for a far-away donor who gave him a second chance at life through a blood stem cell transplant. The gift also spared his parents from losing a second son; Carter's brother died of a brain tumor in 1975 at age 28.

He learned he had acute myleogenus leukemia after struggling to recover from a bronchial infection. His only hope to survive was a stem cell transplant from a matching donor.  Luckily, they found a match for him.  Many are not so lucky.

In a letter, Carter told his donor what her gift meant to him.

"It meant that my father didn't have to bury his other son. It meant that my son didn't lose his father in the prime of life," said Carter, of Grand Rapids. "And it meant that this child would grow up to know me through a relationship and not just through pictures."

Imagine if you were the one reading that letter from Mr. Carter.  Like Toyota, "Oh what a feeling!"

"The important thing to know is once they get to the transplant point in their disease, that's their only hope," said Mary Banfill, stem cell laboratory supervisor. "If they don't do the transplant, it's going to be fatal."

The economy is down.  We are all struggling a little financially.  However, one thing we can always give is a little bit of our time.  If you are reading this blog, most likely, you are able to help.  Go to www.marrow.org - the National Marrow Donor Program and they will give you information on how you may be able to save somebody's life-  and you will get a life long friend in the process and the good feeling of knowing you helped somebody.

Dr. Zannos Grekos of Regenocyte and an esteemed member of the Repair Stem Cell Institute Science Advisory Board presented a published article with clinical data showing that Stem Cell therapy using Adult Stem Cells definitely helps Heart Disease patients with Ischemic Cardiomyopathy and Congestive Heart Failure.

Dr. Grekos made his presentation at the 16th Annual World Congress on Anti-Aging Medicine & Regenerative Biomedical Technologies in Las Vegas last weekend.

From the article:

Dr. Grekos also highlighted several case studies to illustrate his team's success with Adult Stem Cells. According to their findings, cardiac disease patients experience an average increase of 21% in ejection rates as well as measurable improvements in congestive heart failure class status, some in as little as one month post-treatment. "We are able to bring patients from a Class IV congestive heart failure status to a Class II status in less than 180 days," said Grekos.

Here's more:

Regenocyte Therapeutic's clinical data from PET scans confirm that Adult Stem Cells have the ability to engraft themselves into areas damaged by myocardial infarction (heart attacks) and turn into viable new heart muscle. "Three months after treatment, cardiac nuclear scans of the areas treated reveal reversal of damage. We have been able to take patients off the transplant list, and we have been doing it consistently."

Leonel Francisco Liriano, MD, professor of medicine at Pontifical Catholic University School of Medicine and medical director of the Regenocyte Dominican Republic division added that "patient safety is always paramount. We're achieving these results with a treatment that poses minimal risk, much lower than traditional surgical procedures."

Look at that last sentence, although Dr. Grekos treats his patients in the Dominican Republic,  there is no voodoo going on here.  Dr. Grekos uses the patients' own Repair (Adult) Stem Cells taken from the patient's blood (like a blood donation) and implants them using a catheter- the same (lack of) danger as a catheterization ie. minimal risk.  No surgery involved!

An American Opthamologist who has watched some of his patients improve from Adult Stem Cells isn't just sitting back and waiting for a study to say that the Repair Stem Cells work.

Dr. David Klein is going to China to meet with the Beike Biotech doctors and see their stem cell treatment.  Dr. Klein's patient, Cameron Petersen, had optic nerve hypoplasia, a condition in which the optic nerve in a child doesn't develop keeping the child blind.   Before Adult Stem Cells, there was no treatment for it:

From the article

Klein currently treats several patients who have undergone stem cell infusion in China. He became interested in learning more after seeing the progress of Cameron Petersen, the 2-year-old Port Charlotte toddler who underwent treatment last year.

Cameron suffers from optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness.

American doctors told Cameron's parents nothing could be done.

The family researched other options and found Stem Cells China (Beike Biotech), a research facility that has infused umbilical cord stem cells into patients with varying disabilities.

Cameron traveled overseas in August 2007 as part of a case study to treat his blindness.

The procedure consisted of four stem-cell infusions to Cameron's arm and the lumbar region of his spine.

By the third treatment, Cameron was standing on his own and crawling toward objects -- simple tasks he couldn't do before. Now, family members say he can see at least 10 feet, and is attending school.

"Cameron has made huge improvements," said Carol Petersen, the boy's grandmother. "There was nothing for Cameron before this treatment. Now, his world is limitless."

Big Kudos to Dr. Klein for having an open mind and wanting to see for himself.  Instead of ignoring the proof in the form of his once blind patients who can now see-  Dr. Klein didn't keep himself blind to the fact that the cord blood stem cells worked.

He could have waited 1o years for results of some random study to be published in the New England Journal of Medicine, but instead went to see for himself NOW.

Beike Biotech isn't the only company that opens its doors to doctors, I know Vescell in Thailand welcomes cardiologists to see their stem cell therapy for heart disease.  And I don't know this for a fact, but I imagine most of the stem cell treatment centers listed at the Repair Stem Cell Institute would be open to have visiting doctors come to see their stem cell therapy.  They are helping patients now and have nothing to hide.  If  you are a doctor reading this post, please email me at don@repairstemcells.org and I will put you in touch with the right person.

And as for Optic Nerve Hypoplasia and other Optic Nerve disorders, for more information, you can email Dr. Kara Zhang of Beike Biotech- Email: dr.zhang@beikebiotech.com

The United States is moving agonizingly slow towards making Adult Stem Cells available to its residents.   Despite many studies that show Adult Stem Cell research is beneficial to heart disease patients- angina, coronary artery disease, cardiomyopathy, and congestive heart failure patients, the United States is still probably about 5 years away from making it widely available to the public.  How many heart patients will die during that time? Of course, American researchers have other vital things to study.

Well, from a more positive point of view at least articles like these show that they are moving in the right direction albeit too slowly:

Ronald Ferstadt went ballroom dancing the other night.

A few months ago, the Lomita resident couldn't walk around the block without stopping several times to catch his breath because of the damage to his heart from four major heart attacks.

The former machinist said he's probably feeling better because of the millions of stem cells that were injected directly into his damaged heart tissue at the University of California San Diego Medical Center in Hillcrest. He admits, though, that it could be the placebo effect that's making him feel so good. Ferstadt, 71, is one of 17 patients enrolled so far in a 60-patient clinical trial for end-stage heart disease.

There are no more drugs to help these people. A stent does no good, and valve replacements or bypasses are not valid options. So doctors at UCSD and several other centers around the country have received Food and Drug Administration permission to inject millions of bone-marrow stem cells from a donor directly into heart tissue that has been damaged by heart attacks.

While stem cells can be found throughout the body, few are thought to be in the heart, and certainly not enough to prompt the kind of regenerative healing needed after a heart attack.

It took an hour and a half, tops, and I didn't feel a thing, Ferstadt said. He spent the night in the hospital and went home the next day.

The third day after the procedure, I could walk a whole block without stopping, he said. I thought, 'This is crazy “ those cells can't work that fast.'


Ferstadt said the measure is a bit simpler for him: Will I get my life back? Will I be able to play with my grandchildren?

Remember, using a patient's own stem cells- there are no side effects ie.. no down side.


For more information about clinical trials such as the one above- go to http://www.clinicaltrials.gov .

If you want adult stem cell treatment for heart disease- you must go outside the United States, go to the Vescell website or Regenocyte website

Mike Rumble and Leonard Narracci did.

Lots of news recently about storing stem cells taken from a baby's cord blood.  There now seem to be three options when a woman has a baby:

1. All of these new companies offering to store your baby's cord blood, offering the "security" of using perfectly matched stem cells should there be something wrong with your baby. This may cost the parents to the tune of around $2,000-$3,000.  However, the parents of these Cerebral Palsy sufferers-  Dallas Hextell, Chloe Levine, Maia Friedlander, and John Centrello are quite happy they stored their child's stem cells


2. Another option when a baby is born is for the parents to donate their baby's cord blood stem cells to a public bank- where the stem cells may match with an unknown child stricken with Leukemia perhaps.  This costs the parents nothing and has the reward of knowing you may be saving someone's life.


3. The last option shouldn't even really be an option- throwing the cord blood away.  Yes, it is the parents' rights to do whatever they wish to do with it, but it is a waste to simply throw something away that has no ethical issues and could possibly save someone's life.

Obviously, I recommend 1 or 2, but it is up to the  parents obviously.  This article explores the issue in more depth concluding that donating is the better choice:

"The rates of actual use of the stored cord blood in private banks is minuscule; I discourage storage in private banks," he said.

Donation to public cord blood banks, however, is extremely useful. Donation is free. These banks maintain high quality samples and can be accessed by any patient who needs it. While the likelihood of any person using their own cord blood may be low, the likelihood of someone's cord blood being used in the general public is markedly higher.

Also, here is a very lopsided article in Newsweek called "When Medicine Meets Marketing- The business of storing umbilical-cord blood is growing. Is salesmanship outpacing science?"

Yes, just by that subtitle, you can see how "neutral" the story is going to be.


The article basically implies that not only are these private storage companies expensive for cord blood stem cells- they are saying that even on the small chance that a child may need his own stem cells for something like Cerebral Palsy-  that it is "unproven" to work.    Ridiculous.  The article concentrates on Dallas Hextell (one of the kids I mentioned above) and then asks  how the other kids treated with their own cord blood stem cells are doing.   If the Newsweek reporter had done a little more research, she would have dug up  the 4 kids I did who were part of the same study as Dallas Hextell.   In other words- this 74 year old old man did more research than a Newsweek reporter.  It is no wonder that people are now tuning out the mainstream media.

One of the commenters to the articles said it best-

Posted By: aussie142 @ 12/17/2008 8:50:19 PM

It seems like you have a problem with the future of medical research on this subject,and by reading this article,you seem very negatively one sided against this registry.I dont know anybody personally with CP (cerebral palsy) ,but being a paramedic,responding to incidents to help these patients,and seeing the devasting effects of this on the patients as well as the care givers,I would think anything that can be done to "heal" or just slow down the progression of this Illness,should be done.Wether its public or private,stem cell research is just touching the surface,and I beleive that medicine will find out more benefits ,probably using a pts own stem cells,that we have no idea about right now.I know we dont know a real lot on this subject,but come on,wouldnt you want everything done that could be done?What if we didnt have a system in place to bank your childs own stem cells,to find out in 10 or 20 yrs from now,we can cure cancer,dementia,or who knows what else utilizing your OWN stem cells from cord blood?Shame on your 1 sided negative reporting skills here,Im glad Im not a journalist....!!!!

Sometimes I get frustrated with the media. I see this story from Fox News stating that stem cells taken from a patient's nose could help patients with Spinal Cord Injury.

Maybe you are asking yourself "why is Don frustrated? On the face of it, it seems to be a positive story on Adult Stem Cells"

However, let's take a closer look at the story covered by Fox News on Dec. 16, 2008 :

Research from the University of New South Wales in Australia indicated that stem cells from the nose may help spinal injury victims walk again, London™s Daily Mail reported.

Scientists injected paralyzed rats with human nose cells and found the rats could move their hind legs six weeks later.

The scientists are hopeful the research could eventually be done on humans.

The nose cells, called olfactory ensheathing glia cells, normally help the regrow the fibers that link the lining of the nose to the brain.

We think these cells have lots of potential, Dr. Catherine Gorrie of the University of New South Wales, who led the study. They are very accessible. It™s a relatively simple procedure to take them from the patient, grow more of them in the laboratory and then insert them back into the same person.

While I love positive news on Adult Stem Cell research, this isn't news!!!  Dr. Carlos Lima has been helping HUMAN patients using Adult Stem Cells taken from the nose for the last 10 years!!!  Not rats!  HUMANS!!!

The media is a decade behind the times in reporting Adult Stem Cell news and that is one of the reasons I have this blog and formed the Repair Stem Cell Institute. I want people to know that there is help out there and it is available now in the form of Adult Stem Cells.  You just won't find it on the front page of the Washington Post or the New York Times, you have to dig a little.

I covered Dr. Carlos Lima and his Spinal Cord Injury protocol (using stem cells taken from the nose)  for treating humans last week.  I have also covered Spinal Cord Injury patients like Erica Nader and Jacki Rabon treated by Dr. Lima using Adult Stem Cells taken from the nose of the patients.

For even more on this procedure, please see the Repair Stem Cell Institute's Stem Cell for Spinal Cord Injury page.  You can also email Dr. Carlos Lima directly email:  carlosvlima@sapo.pt

Another Dilated Cardiomyopathy patient helped by Adult Stem Cells! I am writing this post thanks to the good people at Vescell Adult Stem Cell therapy blog who have another Adult Stem Cell Victory on their hands. Theravitae, the makers of Vescell adult stem cells have had a nice streak lately. First, I covered Karl Wagner, treated by Dr. Zannos Grekos of Regenocyte for Pulmonary Hypertension. Then, shortly thereafter, Leonard Narracci wrote me a letter saying how Dr. Grekos has helped his dilated cardiomyopathy improve.

I am proud to announce we have another Dilated Cardiomyopathy patient doing well after Vescell stem cell therapy. This time, the patient went to Bangkok where he was treated with his own Adult Stem Cells by Vescell and Dr. Kitipan Arom- the Chairman of the Repair Stem Cell Institute's Science Advisory Board.

Reverend Mike Rumble, a chaplain at a hospital in St. Lucie, Florida seemed to be on his last legs. Suffering from Dilated Cardiomyopathy for the last 10 years, his ejection fraction had slipped to 10% and he was in Stage IV Heart Failure. Mike did some Adult Stem Cell research and found Vescell was the only place where he could get his own Adult Stem Cells implanted to possibly help his Dilated Cardiomyopathy.

Thanks to many of his friends- (and if you look at Mike's Blog, he has lots of them), Mike was able to raise the money needed for the implantation of the Adult Stem Cells. In May, 2008, Mike went to Bangkok, Thailand and had the stem cells implanted into his heart.

According to the original article Mike has improved his quality of life since then "by leaps and bounds!" Also, Mike is now reporting his ejection fraction is now at 25% (up from 10%) and he is getting better everyday. Mike is going to the hospital soon for a new mitral valve clip to repair his mitral valve regurgitation. This isn't stem cell related, but I feel it is worth mentioning for those of you who may have mitral valve problems or know someone who does-

From Mike's Blog:

Anyway, I have been approved for the program for January 09 and it means a two day stay in the hospital and only a minimally invasive surgery to place the clip on the mitral valve. They go up the groin instead of the traditional method of doing an open heart surgery to replace it with a pig valve. So, it is a lot safer, easier, and simple. They also have in the national clinical trial a 95% success rate so they feel that after the trial runs its course that the FDA will quickly approve this new method as a means of repair for those that meet the criteria. What those are I don't know, but I do know that with my sick heart I meet the criteria and that I am grateful for.

A 95% success rate for a mitral valve clip, a minimally invasive valve repair? That is fantastic! Good luck Mike. We wish you continued improvement and hope you are able to get back to work soon.

Duke University is not only a perennial basketball power run by Mike Krzyzewski, it is becoming an Adult Stem Cell powerhouse for Cerebral Palsy patients too. Run by Coach (Dr.) Joanne Kurtzberg I present yet another Cerebral Palsy patient who has been helped by Adult Stem Cell research and the implantation of their own Adult Stem Cells (Repair Stem Cells) saved from the child's cord blood at Duke.

First I gave you Dallas Hextell, a 2 year old boy from Sacremento who was treated at Duke for Cerebral Palsy- Successfully by his own Repair Stem Cells. Later, I presented Chloe Levine, a 2 year old girl who was treated at Duke- again a great success. And just last week, I gave you Maia Friedlander, a 4 year old girl from NEW ZEALAND, who had to travel all the way to Duke University to receive the implantation of her own stem cells, a relatively simple and safe procedure- Again - A great success. And today, I have another one- John Centrello, a young boy from New Jersey who also went to Duke and received his own Repair Stem Cells for his Cerebral Palsy.

Before I present John Centrello, I just want to ask how many stories do I need to post until we can say "Hey! This Adult Stem Cell therapy is working for Cerebral Palsy !! Why don't we make it easily available to everyone and improve even more lives so a child in New Zealand doesn't have to travel around the world for a 15 minute safe and easy treatment?

Here is John before the stem cell treatment at Duke:

Things were not quite usual with baby John, beginning with his first day home from the hospital. He would scream and cry and then fall asleep. He slept through the night and would not wake up to eat. At 10 days old, he was hospitalized for 4 days because he wasn't eating. When John was 3 ½ months old, Danielle noticed that he was left handed. As he got older, she noticed additional signs that she found concerning. In his ExerSaucer, John tilted to the left. He kept his right hand tightly clenched most of the time. His right eye frequently twitched.

By the time John was 6 months old, Danielle was very concerned. When she mentioned her concerns to her pediatrician, he sent her to a neurologist. It turned out that John had had a stroke in-utero and there was some left-brain damage which was causing weakness to his right side. Through an MRI, it was discovered that John's stroke had been massive and a large portion of the left side of his brain was damaged, including his language area.

The first thing Danielle did was get on the Internet and start doing all of the research she could. She was looking for information on pediatric stroke, since she had never heard of it. She eventually discovered a neurologist on the other side of the country who specialized in treating victims of pediatric stroke.

When she contacted the pediatric stroke specialist, knowing she had saved baby John's cord blood, she specifically asked about using the cord blood as a treatment. The doctor told her that she had patients who appeared to have improvement from a cord blood transfusion. She suggested Danielle contact Duke University, where doctors are performing cord blood transplants in an effort to treat cerebral palsy, which is often caused by infant stroke.

And now for the happy after the Repair Stem Cells on September 28th:

The transplant itself took only about 15 minutes. The cord blood had been shipped earlier and the doctors at Duke only needed to use half of John's stored blood. According to Danielle, "There was more than enough cord blood and the doctors at Duke felt we only needed one bag. We have saved the other bag in case we need to use it for something else." The cord blood was transfused through an I.V. into John's arm.

After the transplant, the Centrellos returned home. Less than a week after the transplant, John began pivoting in a circle. Within weeks, they began to notice additional changes in his behavior. His right hand, which was constantly clenched before the procedure, is now usually kept open. The only time it is clenched is when he is deeply concentrating on something. Since returning from North Carolina, baby John has used both hands together and he actually examines his right hand. He has also begun putting his right hand into his mouth. According to Danielle, "He has sensation in his right hand; it is now just a matter of building up muscle."

He has also begun bearing weight on his right side. Since the procedure, he leans onto his right arm. In addition, baby John used to have a crooked smile, where the right side of his mouth drooped. It doesn't droop anymore. He is able to point to things with his right hand; the improvement has been extremely noticeable. John also rolls over in either direction and can go from a prone position directly to a sitting position. One of his therapists believes that he will walk before he crawls.

The Centrellos are not the only ones who have noticed a change. Baby John's therapists have also noticed improvement. While John has extensive therapy ahead of him, the Centrellos are optimistic about the future.

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