The Stem Cell Action Network   is a grassroots, volunteer group of patients and their families and friends.

We support government funding for stem cell research because it has the potential to remedy or cure illnesses such as Alzheimer's, juvenile diabetes, Parkinson's, MS, ALS, spinal cord injury, and many others.

We'd like to hear from you. Feel free to contact us. And please remember, stem cells are for everyone!
FDA Stem Cell Hearings — Who’s Pulling the Strings?
Category: General — By: Raymond on April 29, 2008 at 6:14 pm

On April 10 and 11, the Food and Drug Administration (FDA) held its first hearings on embryonic stem cell research. 

The transcript of what was said is not yet available. But the briefing document provided to the public is not at all reassuring.  On the contrary, it seems to politicize the research and may  even threaten to place manacles upon it.

There’s a good discussion of what is at stake here on Don Reed’s blog: www.stemcellbattles.com.  Don is keeping his eye on this (and on so many other matters of urgent interest to patients!), and I expect he’ll tell us about any new developments.

Stem Cell Action Network Undergoing Reorganization
Category: General — By: Raymond on April 29, 2008 at 6:04 pm

We in the Stem Call Action network are rethinking and reorganizing what we’re doing.

We certainly recognize that there’s a lot to be done!

For one thing, in an election year, we’d like voters to be well-informed about where the candidates stand on stem cell research issues. 

We’re hoping that government — statewide as well as nationwide — will really get on board with this research that holds promise to remedy or even cure so many severe illnesses and injuries.

We’re alarmed, though, by some recent developments, including the FDA hearings earlier this month.  We’ll post a blog entry on that subject shortly.

State of Stem Cell Advocacy 2008 (SOSCA) in San Francisco
Category: General — By: Raymond on April 3, 2008 at 1:36 am

Please join us at State of Stem Cell Advocacy 2008 (SOSCA) on April 12-13, 2008. This conference will take place at the University of California, San Francisco at the Mission Bay Campus Community Center. Advocates will learn about recent progress towards cures in several disease areas, how key federal and state programs are funded, and what they can do to make their voices heard. This series of workshops will provide specific actions that patients and advocates can take to accelerate research and cures.

Kicking off this event is Robert Klein, who led the fight for Proposition 71. In November 2004 the successful passage of Proposition 71 created the California Institute of Regenerative Medicine, granting $3 billion in research funding to California institutions. The conference will also feature Michael J. Fox, actor and advocate, and Brock Reeve, Executive Director of the Harvard Stem Cell Institute and brother of Christopher Reeve.

You can find out more about this conference at SOSCA.

Of Stem Cell Advances, Fountains of Youth, and Suicidal Rabbits
Category: General — By: Don Reed on November 23, 2007 at 2:50 pm


The news is full of the recent Yamanaka/Thomson stem cell experiments, dubbed Induced Pluripotent Stem (IPS) stem cells, or “reprogramming”, supposedly so wonderful that embryonic stem cell research is no longer even necessary!

 

First of all, what is IPS?

 

Basically, 4 genes are placed inside a skin cell. According to two studies, one by Shinya Yamanaka and the other by Jamie Thomson, the skin cell is manipulated backward in the developmental cycle until it becomes young again, embryonic-like, a sort of cellular fountain of youth. 

 

Is it embryonic-like, or Embryonic-lite?

 

IPS cells could be an exciting new tool for the cause of cure—or maybe not. 

 

Personally, I am in favor of investigating any promising new tool, including this one. There are problems associated with it, such as the fact that 20% of the experimental mice developed cancer—but there may be ways to overcome that unacceptable risk.

 

What needs to be done is simple: Investigate, duplicate, replicate, test: perform the same rigorous examinations on which all good science is built: only then will we know.

 

If IPS works, wonderful.

 

If it brings more federal, state, or private funding, that would also be helpful—the amount of money invested in medical research of any sort is pathetically inadequate.

 

But should we, for this one possibility, abandon all other embryonic, SCNT and adult stem cell research already underway?

 

Should we (as Bob Klein said, in a recent interview) “bet the farm” on this one approach?

(Read on …)

Stem Cell Research Loss in New Jersey
Category: General — By: Raymond on November 10, 2007 at 1:47 am

# 387 Wednesday, November 7, 2007 - STEM CELL LOSS: $450 Million Research Bill Denied in New Jersey

As you may know by now, the New Jersey Stem Cell Research Bond Act lost: 53% to 47%.

First, let no one trash-talk the campaign director. In an unequal battle, working very nearly without a budget, Russ Oster gave it everything he had. He is a good man, and I would be proud to work beside him again, any time.

But the Religious Right out-moneyed us, out GOTV’ed us, and definitely out-lied us.

We cannot stop their lies. They cannot ever beat us on the facts, so they are forced to make up stuff, and they do.

But the other two factors, the money and the Get Out The Vote (GOTV) effort—there we can and must do better.

In visible dollars, the opposition spent about a million on the campaign, about twice what we had—but that was only the tip of the iceberg.

The opposition ran their campaign quite literally inside the Catholic Church, as well as receiving support from other Religious Right groups and some anti-tax organizations.

The Catholic Church has been attacking embryonic stem cell research non-stop for the past six years…and that means in every church they own across the land.

They fought us with TV commercials, pulpit homilies, radio and print ads, glossy fliers and handouts, paid lobbyists and lawn signs.

We went unarmed against the largest single property owner in the world.

How can we do better?

Two things leap to mind.

First, it was a major mistake to try for the act in an election “off year”.

It would have been better to try for the act in a Presidential election year, when we know folks are going to the polls. Voter turnout would have been at least double and perhaps triple the miserable twenty-something (don’t know exactly yet) it was.

That would have allowed New Jersey to mount a two-year campaign: the first year for raising funds—an effort of this magnitude must have a serious budget.

Money is the second problem.

Consider: California’s great Prop 71 effort was backed by a budget of $30 million. Missouri’s epic battle to pass Amendment 2 was funded by a similar amount.

Where will this money come from?

I urge every stem cell activist to contact their friends in the biomedical industry.

Now we all know the good work in teaching groups like BIO is doing.

But as an industry, in my opinion, the biomedical industry has been short-sighted and stingy in the extreme. It is not good enough to occasionally say a few nice words about the industry which will revolutionize the world of medicine—it will require a financial commitment.

America needs to spend billions on research. That means the campaigns must be backed.

If government billions are wanted, industry millions must be raised—so get on the ball, big BIO! The opposition always says you guys are behind the regenerative medicine effort—maybe it is time they were right!

In Proposition 71, the decision was made not to seek or even accept money from biomedical groups.

In my opinion, that was a mistake.

California was able to win anyway, but we had Bob Klein on our side, giving up his savings, the profits his company had made for years. He gives way too much, and cannot give more.

But is regenerative medicine to become big as the Defense Department (and why not, when millions of our citizens are needlessly dying, in a losing war with chronic illness?) then we must think and act like the Defense industry does. Big Bucks, not pennies.

I can sum up what we need in two words.

CAMPAIGN CONTRIBUTIONS.

Let every biotech company contribute to the campaigns advancing stem cell research.

To the best of my knowledge the entire donation of biotech dollars to the New Jersey effort was $10,000—that is pathetic. It should have been at least ten million—with half a billion in research money at stake.

We can and must do better.

Or we will have to get used to losing.

Don Reed
www.stemcellbattles.com

Please support stem cell research legislation in New Jersey’s election on Tuesday
Category: General — By: Raymond on November 4, 2007 at 6:00 pm


The following message has been sent out to "People of Faith" petition signers in New Jersey:

**************************
Sunday, November 4, 2007


Dear Signer of the "People of Faith for Stem Cell Research" petition,
 
We began the petition (www.pfaith.org) in favor of stem cell research a couple of years ago.   Thank you for joining many thousands of Americans accross the country in signing that petition, thereby voicing your support for this potential life-saving research.. 
 
We send email to signers very rarely, but we feel that this is a crucial moment — two days from now on Tuesday, those who live in New Jersey will have to opportunity to vote in favor of the New Jersey Stem Cell Research Bond Act.  If you don’t already know about this ballot proposal, please visit www.njforhope.org).
 
We fervently request that you give your support to this measure.  And that you ask everyone  you know to vote in favor too.  This legislation will help to make New Jersey a leader in the search for stem cell therapies through public funding of the research.

Scientists understand that potential effective remedies for many illnesses are locked inside stem cells.  As New Jersey advocates say, "Putting New Jersey on the cutting edge of stem cell research means hope for millions and a tremendous boon to the economy of New Jersey. "


Many people in New Jersey may not be aware that this matter is going to be on the ballot.  On Sunday and Monday, please talk with friends, family, and colleagues and explain to them the importance of this ballot measure.
 
This promises to be a close election.  With your help, we believe we can win!
 
Thank you for your attention to this message.
 
Raymond Barglow, Ph.D., Board member, Stem Cell Action Network
New Jersey Uses Michael J. Fox, and Holds Back Embryonic Stem Cell Research
Category: General — By: Faye on November 1, 2007 at 2:49 pm

Let me preface this blog entry by saying these are my personal views, and they do not represent the views of SCAN:

I am convinced that what is happening in New Jersey will keep my son in his wheelchair longer than necessary.

For years, I thought the pro-lifers were at fault, but now the "establishment" pro-hESCR ( human embryonic stem cell research) folks have joined them.

Please pass this message on to Michael J. Fox.

Clearly we are very much being misled in New Jersey by establishment Democrats.

How am I going to tell my son, we’ve been used, exploited, to build up the positive message of hESCR, to instead garner $$$ for adult stem cell research in New Jersey?

My son Jason, was only 7 years old when he became paralyzed from the nose down after colliding with another soccer player. While his four sisters’ lives have moved forward, now at age 17, Jason is feeling terribly left behind.

Since 1999, it has been my mission to make sure the promise of hESCR ( human Embryonic Stem Cell Research) is being pursued both on the federal level as well as the state level. I loved Jonathan Moreno’s article titled "Hope is not Enough" and Embryonic Stem Cell Research by the numbers:
http://www.americanprogress.org/…

So ever since March, this year, I have been trying to alert the various hESCR organizations about how NJ puts politics before progress.

New Jersey has been touting the fact that they were the first or second state to appropriate funding for hESCR, yet an examination of the actual dollars awarded to hESCR, the research that the federal government has restricted, reveals that it is dismal at $600,000 out of $15 million awarded so far.

As comforting as it was to know that CA did in fact decide to put $3 billion over 10 years towards hESCR, it is discomforting to know that other blue states such as NJ will use the positive propaganda of hESCR, to get taxpayer support for a state program that unbeknown to them has had a track record of funding primarily adult stem cell research at 95%.

I find it immoral for New Jersey to tout the promise of hESCR and then turn around and use funds that the public expects where intended for hESCR, to cultivate adult stem cell research in New Jersey instead.

For patients groups and establishment democrats to actively be promoting what is fundamentally an adult stem cell program under the guise of it being for human embryonic stem cell research,  is hypocrtical and playing into the hands of the Pro-lifers because their message all along has been: we don’t need hESCR.

Resorting to the highly unethical use of celebrities and patients who people identify as pro-hESCR, to essentially promote such an almost entirely adult stem cell research program is beyond believe!

For more details on the New Jersey Stem Cell Program, please read this front page article in Science Progress:

Garden State Deceptions: Behind the Scenes in the NJ Stem Cell Program

Here is an excerpt:

The first tell-tale sign that New Jersey’s current focus is primarily directed toward umbilical cord stem cell and other adult stem cell research came, with the issuance in December 2005 of two grants (at $350,000 apiece) to the Ellie Katz Umbilical Cord Blood Program and the Coriell Institute for Medical Research to create the nation’s first public cord and placental blood bank for stem cell research.

This was followed in 2006 with the allocation of $270 million in state support to build and equip five stem cell centers, four of which are solely dedicated to adult stem cell research. One of the four stem cell centers is set to perform umbilical cord stem cell clinical trials. New Jersey also awarded two grants of $250,000 each to two researchers developing standard operating procedures for umbilical cord stem cell clinical trials.

Please note, I am not against adult stem cell research such as research on umbilical cord blood stem cells. They just don’t hold as much promise for the treatment of paralysis

Michael J Fox in his NJ radio message is heard saying:  

"NJ residents will be asked to do something that President Bush won’t do, fund stem cell research"

 Hmmmm, Bush won’t fund  umbilical cord blood stem cell research? That’s new to me………!

It’s really scandalous to use the positive message of human embryonic stem cell research, that activists like myself and Michael J. Fox have worked so hard to attain, to trick voters into funding adult stem cell research.

PS. Back in 2004, my son and I were on stage with Michael J Fox campaigning for human embryonic stem cell research. See here:

http://www.sptimes.com/…

I’m really saddened, that NJ is neglecting human embryonic stem cell research, and that many patient groups are going along with it, in order to support establishment democrats.

The Stem Cell Action Network endorses NJ Stem Cell Research Referendum.
Category: General — By: Raymond on October 30, 2007 at 4:13 pm

The Stem Cell Action Network endorses New Jersey’s Stem Cell Research Referendum, which will be on the state ballot in November 2007. This measure, like measures supporting the research in other states, offers hope for effective therapies to millions of Americans suffering from severe illnesses.

The research funded by this measure will include some embryonic stem cell research, the most promising basis for developing new remedies and cures. Because the current federal administration bans federal funding for this kind of research, it is all the more important that states provide resources to fill the vacuum. As Faye Armitage points out: "the general consensus among researchers is that embryonic stem cells … hold the greatest promise to derive treatments that can alleviate the suffering from spinal cord injury and a host of other debilitating and deadly medical conditions."

We are aware that stem cell research funding in New Jersey has, in the past, gone largely to adult stem cell research, and we are concerned that human embryonic stem cell research may in the future be underfunded by the referendum currently under consideration. It’s important that that not happen. NJ Senator Ellen Karcher has pointed out in a letter to the state’s governor that "If New Jersey wants to become a leader in stem cell research, it must also be a leader in promoting embryonic stem cell research." We in SCAN agree with that sentiment.

Funding agencies can only subsidize, of course, those research proposals that are submitted to them, and among these there may be relatively few that propose to use embryonic stem cells. However, funders can and should actively encourage the submission of research projects that work with human embryonic stem cells, thereby widening the range of projects that might qualify for support.

Nothing said above, however, diminishes our support for the New Jersey referendum. We patient advocates deeply respect and appreciate this effort to make New Jersey a leader in the search for stem cell treatments that will alleviate so much suffering and save so many lives.

SCAN is a nationwide organization. We ask that all of our members and friends across the country do whatever they can to help pass the NJ measure. To begin with, please telephone everyone you know in New Jersey and ask them to vote in favor!

Thank you,

Raymond Barglow, Board of Directors, SCAN
Steve Meyer, Board of Directors, SCAN

Polistem a Real Grassroots Meeting Place
Category: General, Legislation — By: Faye on October 28, 2007 at 6:47 pm

What is Polistem?
Polistem is an online social network for the stem cell community. You may be familiar with the hugely popular MySpace social networking phenomenon. Our concept is similar in that we are indeed a social network but we are uniquely different: we cater to a targeted niche community, the proactive stem cell community. To find out more about who we are and the services we provide, please take a tour of our site and feel free to register.

About the Founder
About the Founder.pdf

Why was Polistem created?
There is no doubt that stem cell research and development has, and continues to be, a topic of great importance medically, scientifically, socially, and politically. Recently there have been great advances made in medicine because of stem cell research. Stem cell research is playing an essential role in helping to cure devastating diseases that plague people all over the world. Polistem was created so that each and every person who is affected by the positive outcomes of stem cell research can unite as a community to forward its advancement.

What does Polistem mean?
When Polistem was started, the founder thought it was essential to come up with a name that was creative, professional, and easy to remember. After a month of innovative and inspirational thought the name Polistem was born. The first four letters “Poli” come from the word “Political.” Because stem cell research is such a politically charged topic it’s only reasonable that this be included in a name that promotes stem cell research, development, and policy. The last four letters spell “Stem” which is defined as “the ascending axis of a plant, whether above or below ground, which ordinarily grows in an opposite direction to the root or descending axis.” It is also a word that is associated with “stem cells” and represents growth. When you combine the two words, you get eight letters that spell POLISTEM.

What can I do at Polistem?
As a registered member of Polistem you can enjoy the following benefits and features.

  • Daily updated news relating to the stem cell community
  • Interact with other stem cell research supporters
  • Let your voice be heard by creating your own blog
  • Find new friends, colleagues, and business associates
  • Share information and ideas through our forums
  • Learn about upcoming events and conventions
  • Connect with others who have similar disabilities
  • Create a Group for your own organization or company
  • Share pictures, videos, and documents relating to stem cell research

http://polistem.org/index.php?page_i…ssage=about

Blinded by the Glitter of a “World-Class” Stem Cell Researcher
Category: General, Spinal Cord Injury, Cure Paralysis, Cure Paralysis Now, clinical trials — By: Faye on October 18, 2007 at 6:42 pm

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 Monash 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.  

The Stem Cell Summit was terrific, and I am glad Fiona Murray was there to elucidate that simply throwing money at scientists is counter-productive. In closing here is another cautionary statement about scientist productivity, which I found on the web today:
 
"Time and time again around the world, too many (stem cell research) scientists have bent the rules for their own personal gain. Research simply must not be funded without the highest degree of public scrutiny…….
 
……not allow itself to be blinded by the glitter of a world-class (stem cell) researcher."
 

Note: The blog entry above reflects my personal views as an economist and a prolific hESCR activist. The views expressed do not necessarily reflect those of SCAN.

Next Page »
 
V88337