As an economist, being traditionally concerned about the efficient use of scarce resources, I’ve always been intrigued by the concept of measuring productivity in research leading to innovation. So I was uniquely pleased to see Fiona Murray’s perspective represented at the Boston Stem Cell Summit, which was held Oct. 2-3, 2007.

Fiona said that throughout America’s scientific past: there has been "resistance to the idea of studying scientists". The prevailing notion was to "just throw money at them ( for their research) cause they are very special people". So she decided "to study how science is organized, and if scientists are working in the most productive way".

To do this Fiona decided to "learn from the different models ( for stem cell research) that are going on around the world". One particularly successful model was instituted by the "Monash Angels". Agreements to share stem cell research before publication, were very conducive to speeding up the research. Private Investor funded research like that of the Monsah Angels proved to be very productive. The EU is also imposing the need to work together on stem cell research.

The next day, in a later session about attracting venture capital for stem cell research work, Doug Fambrough of Oxford Bioscience Partners, said that the model of pharmaceutical companies buying out biomed companies after successful stage 1 clinical trials, is going to be replaced by fast tracking small scale clinical trials for stem cell research through stages 1,2, and 3, to quickly provide proof of concept in humans.

Following this, there were concurrent sessions focusing on the latest advancements and challenges for stem cell research towards the understanding and treatment of Diabetes, Parkinson’s, ALS and Neurological Disorders, Spinal Cord Injury and Paralysis and Cancer. In the Spinal cord injury session Dr. Kessler mentions Dr. Young’s large scale umbilical cord stem cell clinical trials palnned in China, and says they are "doomed to fail". A lot more needs to be learned and simply delivering stem cells isn’t the way to go.

My comment on is that I have long held concerns about Dr. Young’s $50 million China spinal cord injury trials, as he has previously engaged in large US clinical trials for spinal cord injury that though published, were later found to have manipulated statistics to show efficacy of methylprednisolone where none may have existed. Economists have long coined a truism that if you torture statistics long enough, they’ll confess to just about anything.  I sure hope the China clinical trials using umbilical cord blood stem cells are not going to show a similar "concocted" minor improvement. Mostly I fear hope is being mis-directed by a "well-known" scientist, which I find even more reprehensible than when "experimental" treatments are being offered overseas.

Most consumers of these "experimental" treatments offered overseas, are fully aware not to expect major results.  

How pale are words, compared to the blazing reality of a maple leaf in Autumn — or a stem cell convention.

The Stem Cell Summit, October 2-3, was organized by Bernie Siegel’s Genetics Policy Institute, Steve Burrill’s Life Sciences Media Group, and, Harvard University, one of the greatest educational institutes in the world.

It was October 2, 2007. Hynes Convention Center, Boston Massachusetts . High ceilings, spacious auditoriums, light sources suspended high above, a soaring atmosphere.

It’s hard to pull highlights out of a meeting that was all highlights. But let’s try anyway.

Jammed—more than 600 high-impact executives, entrepreneurs, scientists, politicians, patients and activists—it occurred to me we really did not want an earthquake today, or we could have lost a huge cross-section of the stem cell research leadership of the nation.

(Read on …)

Besides the primitive wheelchair, treatment of paralysis has changed little since Marlon Brando starred in the 1950’s movie, The Man.

Oh, yes prosthetics ( like one could consider the wheelchair to be), have improved some but the basic "treatment" of providing a wheelchair is still the only thing that can be done. And sure there are a few more options in rehab., but there still isn’t anything available that can either prevent the neural damage that causes paralysis, or that can repair any of the neural damage.

"Establishment" Medicine has grossly failed to provide anything better than the primitive wheelchair.

It is completely unacceptable then, to hold up the most promising research, the research with the most versatile stem cells, the ones that are the goldstandard for pluripotency because of fundy politics.

Pushing the boundaries with embryonic stem cell research is Dr. Geeta Shroff, who does not promise cures, but has produced improvements in many of the 60 spinal cord injury patients she has treated. Her research and treatment complies with India law and standards, though it remains experimental.

 A lot can be learned from her embryonic stem cell applications, including the fact that no tumors have been reported in any of her 300+ patients. This had been one of the fear tactics, long used by the fundy embryonic stem cell research (ESCR) opponents.

Hopefully Dr. Shroff will get an opportunity to present her work to her peers, at a medical conference as held by many medical societies annually. I sure would like to learn more about what she’s doing, and maybe we can put some of her findings to good use to speed up progress toward more substantial paralysis treatments.

Dr. Huang of Bejing was given the chance to present his fetal OEG transplant work to the world,……. let’s see if we can do the same for Dr. Shroff. We might find ourselves in a situation where "establishment "scientists will have play catch-up to the real pioneers like Dr. Geeta Shroff.

We at Stemblog have decided to weigh in on the medical tourism issue, which is fueled by the lack of adequate curative treatments available in the US for many of the 100 million Americans who suffer deadly or chronic medical conditions. As this doctor says on the hope that stem cells injected into the spinal cord area will morph into the specific cell type needed to heal the damage:

"There is some evidence that this occurs in animal models," Magnuson said. "There is some basis for this. It’s just not proven to work in humans."

So should we wait or not, to try and improve our lives?

First, I want to caution that just because something has been "proven", doesn’t necessarily mean it works, or that it doesn’t have any undesirable side effects.

A prime example is the common use of methylprednisolone for acute spinal cord injuries, which initially was hailed as a medical breakthrough in the treatment of spinal cord injury, but in follow-up studies by others was found to be completely ineffective, with possible dangerous side effrects.

You can easily see that it’s equally important  to realize that there are huge dangers in legitimizing "proven" treatments that later turn out to have no value whatsoever.

Since 2001, Canada has therefor been moving to discontinue the use of methylprednisolone altogether in spinal cord injuries ( Neurosurgery - Fulltext: Volume 59(5) November 2006 p 957-987 ), and it is also not generally recommended by most spinal cord injury centers in the UK.

At the same time the cooling saline IV treatment that NFL player Kevin Everett received and which  "has a very robust and powerful effect" known since the early 1980s to prevent neurological damage remains underutilized, which I find unconcionable. Even though guidelines STILL don’t call for this treatment, because it hasn’t officially been "proven", one doctor says this about the lack of its use: "We wouldn’t consider it ethical now to withhold that [because] we’ve shown it’s useful."

For the medical establishment to wait is cruel and unacceptable in this case.

Now, let’s see what you might want to take into account as you make YOUR decision to proceed with currently available ADULT stem cell treatments overseas, or to wait for some better stem cell treatments to come along from continued stem cell research. Only one embryonic stem cell treatment is offered overseas. The more common Umbilical cord stem cell treatments are considered ADULT stem cell treatments as the stem cells are obtained after birth.

Most of all we want to caution those who are considering overseas’ stem cell treatments, NOT to expect MAJOR improvements. Realistically there aren’t any stem cell treatments available yet, even overseas, that can lead to MAJOR improvements.

However if minor to moderate improvements could mean a significant difference in your life, or if you are suffering a deadly condition, it seems reasonable to give these treatments a try, provided they don’t have harmful side effects, and you have the financial resources and emotional strength to handle a possible disappointment in the results.

Keep in mind that, even though minor improvements do seem to be the norm, some will experience no change at all.

On a personal note: though my son(17) ( who became paralyzed at age 7 after colliding with another soccer player) and I have engaged in medical tourism from 1997 to 2005, we have yet to try any of the stem cell treatments overseas. Our most recent trip in 2005 was to France for laseracupuncture. Our first trip was to the island of Cyprus in 1997 for amino-acid treatments as developed by the russian Primavera clinic.

So far we’ve drawn the line at anything invasive like surgery, but might consider repeated stem cell injections if more major improvements are consistently seen.

In the past I have frequently mentioned the willingness of female family members such as my son Jason’s four sisters to donate egg cells, to enable the development of a treatment that repairs damage to his cortico-spinal tracts and thus restores motor function to him.

Fortunately women, who themselves are patients, will now be given the opportunity to donate egg cells that would otherwise be thrown out as a byproduct of their own treatments.

Women, who are also frequent caregivers to injured or sick family members, arguably have more at stake in stem cell research than any other segment of our population, besides the injured and sick themselves. Their understanding of the immense need to find solutions to the horrible suffering of those they care for is unparalleled.

I therefor applaud Dr. Allison Murdoch’s new program that encourages women to help patients, so they can get their own treatment at half price:

Scientists at the Centre for Life said that human eggs donated as part of the MRC-funded scheme are "spare" and unfertilised eggs that would otherwise be thrown away.

Any residual DNA material would be removed from the donated egg before attempts are made - through an advanced procedure known as nuclear reprogramming - to replace the nucleus of the egg with donated cells from a patient.

The aim is to try to encourage the cell to divide, producing a line of stem cells that could be made to become different types of tissue.

One of the favorite arguments used "against" federal funding for ESCR is that "ESCR hasn’t led to a single cure yet". The catch 22 is that lack of research funds inevitably leads to lack of progress.

But luckily those who make their false claim are grossly wrong, as I know of at least three treatments that will be going to clinical trials in 2008. Two are for spinal cord injury and one is to treat blindness.

Ironically the first treatment uses cells from the 8 week stage of development that were obtained from elective abortion, but which are actually eligible for federal funding:

(Read on …)

With a new President on the horizon, things are definitely looking up in the cutting-edge science arena. We will most certainly be able to accelerate the innovative discoveries needed to cure devastating medical conditions.

Those of us who are dealing with debilitating and deadly disorders in our families, will be pleased to find out about the latest advances that have already been made in hESCR and other stem cell research.

I urge you to check out this exciting line-up of leading stem cell researchers, and meet policy experts and family advocates at The Stem Cell Summit in Boston, Oct 2-3, 2007. Partial roster of speakers:

Edward J. Benz, Jr., MD
CEO, Dana Farber Cancer Institute

Kenneth R. Chien, PhD
Director, MGH Cardiovascular Research Center

George Q. Daley, MD, PhD
Principal Faculty, Harvard Stem Cell Institute
Assistant Director, Stem Cell Research Program, Children’s Hospital Boston
President-elect, International Society for Stem Cell Research (Read on …)

I am pleased to report that the Seventh Annual Research for Cure Dinner was a huge success, due to 1. Dr. Keirstead’s presentation plus his easy manner of cruising through the attendees, allowing everyone an opportunity to speak to him about their own concerns. 2. The efforts of a growing number of volunteers.

Below is a brief synopsis of Dr. Keirstead’s stem cell research presentation. It lacks the details and the excitement that Dr. Keirstead has for this work, which is quite contagious.

Keirstead worked with Dr. Thomas Lane at UCI, whose interest is multiple sclerosis, to develop a means of reducing the inflammatory response immediately after trauma or injury to the nervous system. Together they developed a treatment for multiple sclerosis, which Dr. Keirstead’s group then adapted for use in acute SCI. (Read on …)

Jeff Eisen commented on the CIRM funding in the comment section of the previous blog entry. He said:

According to the CIRM in California, the breakdown of grants to date is as follows:

1. $37.5 million for training, supporting 169 pre- and post-doctoral fellows at 16 different institutions.
2. $50 million for facilities; research labs shared by 17 institutions
3. $46 million for 76 different “Seed Grants”
4. $76.6 million for “Comprehensive Grants”; 4-year studies, 29 different investigators

(Read on …)

Sadly Debbie Kelsoe who was spinal cord injured on Oct 18th, 2000, in a car accident, passed away from an aneurism earlier this month.

Besides Christopher Reeve and my son Jason who also became paralyzed in Jan, 1997, no one has inspired me more than Debbie. Debbie was an ardent stem cell research activist and also authored a book to increase awareness of the horrors of living with a spinal cord injury. The dire need for embryonic stem cell research and the cruelty of any further delays are apparent from seeing what has happened to Debbie. Please check out her book The Silent Minority No More.

Debbie also was one of a group of six, who co-founded Cure Paralysis Now

 Her spirit will live on in all the people she touched.

Some people’s lives can truly make a difference. However long or short their lives on earth, they give the gifts of kindness and of caring. They sow the seeds of friendship and awareness. Some people’s lives are beautiful examples of putting others first and when they’re gone, the lives of those they touched are so much richer, and the love they shared lives on and on.

Luv Ya, Deb. I will so miss you.