# 375 Tuesday, October 16, 2007 - MEANWHILE, BACK AT THE STEM CELL SUMMIT
But first-- POPE STILL AGAINST SCNT…
Sigh… the hoped for breakthrough did not happenâ€" Pope Benedict must still be listed with the enemies of embryonic stem cell research, including Somatic Cell Nuclear Transfer (SCNT). Below is the “correction†from the Associated Press, stifling the happy moment when it seemed the Pope might have come over to our side…
The original piece said: “(Pope) Benedict noted that the Vatican does not opposeâ€"and in fact encouragesâ€"somatic stem cell researchâ€"also known as “therapeutic cloningâ€, which uses human eggs specifically for research from which stem cells are harvested. The Vatican approves of such research because it doesn’t involve obtaining a fertilized egg or embryo to harvest the stem cells. The Vatican holds that life begins at conception.â€â€"end quote.
Now, the frantic correction .“Correction: Pope-S. Korea Stem Cells Story By The Associated Press VATICAN CITY (AP) â€" In an Oct. 11 story about papal reaction to embryonic stem cell research in South Korea, the Associated Press erroneously described a type of stem-cell research supported by Pope Benedict XVI. Benedict said he supported and encouraged "somatic stem-cell research," also known as adult stem-cell research, which involves stem cells that are not derived from embryos. The pope did not say he supported somatic cell nuclear transfer, also known as "therapeutic cloning," which uses human eggs specifically for research from which stem cells are harvested. The Vatican opposes such research.â€
Meanwhile, back at the Stem Cell Summit… Part Two. (See Archives at www.stemcellbattles
A richly deserved national grass roots advocacy award went to Donn Rubin and the Missouri Cures Coalition, 60,000 Missourians and friends of stem cell research.
As you remember, the “Show Me†state fought through a state Constitutional change, Amendment 2, which passed in 2006.
Amendment 2 establishes the legality of Somatic Cell Nuclear Transfer (SCNT, sometimes call therapeutic cloning, the kind that is cells, cells, nothing but cells), and embryonic stem cell research: any federally approved stem cell research.
This was especially important, because two kind people, cancer survivors Jim and Virginia Stowers, wanted to build a $200 million medical center in Missouri, to do regenerative medicineâ€"and modern stem cell researchers are naturally going to want to do Somatic Cell Nuclear Transfer research.
The Stowers hoped to hire some of the best stem cell researchers in the world, people like SCNT expert Kevin Eggan, and bring them to Missouri.
The only problem was, as Dr. Eggan noted, “I don’t want to wake up some morning and discover I just became a felon because the research I do in my lab.â€
And every year for the past four years, the Religious Right has tried to pass some law to ban stem cell research in Missouri.
Soâ€"the great debate. Amendment 2 went through through the full electoral process.
On our side were roughly 60 patient advocate groups, and the Stowers.
On the other side? The main groups were:
Operating out of conservative churches, the opposition tried to make stem cell research seem like abortion. They ran pictures of babies on campaign literature, saying researchers wanted to kill “tiny pre-born human beingsâ€.
And in what must be an all-time low, they even handed out plastic toy-size fetuses to children at the county fair.
Here are some of their actual words. “The folks that would prey on our hopes at the cost of our souls….God hates you.†-Catholic Activist Alan Keyes, Springfield News-Leader, September 22, 2006
“To kill that human being is an incalculable outrage and a repudiation of our entire civilization.â€--Bill Saunders, Family Research Council “Focus on the Family founder James Dobson has equated stem-cell research with Nazi medical experimentation… Kansas City Star, September 13, 2006 He [Richard Doerflinger, deputy director of pro-life activities… U.S. Conference of Catholic Bishops] compared embryonic stem cell research to Nazi-era medical experimentation… National Catholic Reporter, September 15, 2006 “There are tens of thousands of tiny defenseless pre-born infants counting on us.â€- Rick Scarborough, Founder, Texas-Based Vision America, Rick Scarborough Report â€" www.visionamerica.
But Missouri voted YES on supporting research: YES on Amendment 2.
And that was the happy ending, right? Unfortunately, no.
The opposition immediately started to trying to overturn the election results. ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
“[passage of Amendment 2] shows how deeply rooted the culture of death is in our society.†- Archbishop Raymond Burke, Statement Issued 11/8/06, Fox 2 News St. Louis, November 8, 2006 “The worst news of the year was the narrow passage by Missouri voters of Amendment 2â€"which legalized human cloning for biomedical research in what some now refer to as the “Clone Me State.â€. Stem Cell Research, Cloning and Euthanasia, Bioethics Year in Review, Wesley J. Smith, Lifenews.com, December 11, 2006These are expert propagandists. They know if they talk about cures and the millions of suffering people, they lose.
So, the opposition has changed their attack.
Their new strategy is “Dolly, daughters, dollarsâ€â€" 1. cloning scares; 2. building up worries about women being exploited for their eggs; 3. attributing greed to researchers in general and the Stowers in particular.
As before, their arguments are false.
First, Amendment 2 specifically makes human reproductive cloning a crime.
Second, the techniques used for egg donation are the same ones used every day at in vitro fertility clinics everywhere, exactly as has been done for the past decade.
And greed as a motivating factor?
That is pretty ridiculous, even for the opposition. Fox TV’s Bill O’Reilly “investigates†Jim and Virginia Stowers on Fox News, implying they are doing this for the money.
What is the Stowers’ financial situation?
Bill Neeve, chief scientist for the Stowers institute, spoke briefly about this to the convention.
Jim and Virginia Stowers started their personal business with ten thousand dollars-- and currently manage assets over $100 billion. They do not need to make more moneyâ€"they are trying to give it away, in the manner which will most benefit the worldâ€"through medical research.
They had already built one medical institute, but they had hoped to build another.
Now the opposition is back with still another anti-research effort, attempting to criminalize SCNT, which they call cloning.
So, the Stowers did three things:
The fight goes on, folks. Missouri has a whole lot more to say on this.
And what is it, exactly, that they and we are fighting for?
Dr. George Daley, President of the International Society of Stem Cell Research had a brilliant line, saying (from my memory, this may not be exact):
“The 20th century may be regarded as the era of medical drugs; the focus of the 21st century will be regenerationâ€.
Imagine what that could mean. Diseases of tissue lossâ€" or organ failureâ€"might be met with stem cell therapies, growing new tissues, or new organs.
Dr. Daley spoke of using SCNT to model diseases so we could test new drugs on cells in a Petri dish: shortening the expensive process of drug testing, which may cost one billion dollars (literally) per drug.
Ian Wilmut was there, the bearded friendly “father†of Dolly the first cloned sheep, now working at a Center for the Study of Regenerative Medicine in Edinburg, Scotland. He is NOT interested in cloning people; but he is very interested in SCNT as a way to study ALS, Lou Gehrig’s disease. which he calls motor neuron disease,â€" a disease resulting from CORRUPTED PROTEINS. I put that in capitals because a lot of the scientists kept talking about the importance of proteins.
For instance: Dr. Rudy Jaenisch, another world authority on SCNT, said: “WE MUST REPLACE VECTOR-MEDIATED GENE TRANSDUCTION WITH PROTEIN TRANSDUCTION.â€
Is that a way to get the cells to the problem area? I don’t know. Maybe someone could explain that to me?
One thing I did understand is the problem of getting eggs for stem cell research.
As you know, SCNT (Somatic Cell Nuclear Transfer) means taking a somatic cell (like a skin cell) and putting it inside a human egg like a woman loses every month.
Later, we probably will not need eggs at all. But for right now, we do.
I always felt California’s Prop 71 made a mistake by not allowing women to be paid for their donation of eggs. I understand the reasoning: no one should be exploited, and the opposition uses that fear (fear is their main weapon) as a way to try and shoot down the research. So, Prop 71 took away the financial incentive to donate. This gained us nothingâ€"the opposition is still attacking us as hard as they can-- and denying the right of compensation in a free society may have cost us a great deal.
For instance: Dr. Kevin Eggan’s lab spent $100,000 in advertising, asking women to donate eggs.
And the result? Zero. Many women came forward, but when they found out the hassle involved and that they could not be paid, not one woman would donate.
Two possibilities:
1. Someone mentioned a rather personal subjectâ€"having a hysterectomyâ€"at first I cringed like I might if someone asked me about my vasectomy. But this was important, because if there are hysterectomiesâ€" and there are many-- what happens to the eggs? Maybe they could be donated, instead of being uselessly thrown away.
2. I raised my hand at one point (well, okay, I raised my hand at several points, being at an age when everything reminds me of something else) and asked:
Could women going through IVF (to have a child) be given the procedure for free, or at a cheaper rate, in exchange for donating their leftover eggs?
This was not an original idea from me. I stole it from somebody smarter. If memory serves, England is considering this.
So much was going on at the Stem Cell Summitâ€"so many good people!
Like Susan Carlson of WiCell, spokesperson for the Wisconsin stem cell folks, vivacious and charmingâ€"and understandable! She can talk about Intellectual Property (which subject glazes my eyes over) in a way that brings the different sides closer.
Somebody mentioned the WARNOCK COMMITTEEâ€" years ago, in England, a systematic effort was made to bring all the different viewpoints of stem cell research together so people could study them objectively.
Oh, and do you know AMY COMSTOCK-RICK, Executive Director of the Parkinson’s Action Network? She had a great line, a sentences we should tattoo on our hands so we could carry it around:
“Advocacy brings control back into your lifeâ€.
That is so true. When incurable illness or injury strikes, you feel in a whirlwind; everything you thought you could count on seems gone. Advocacy gives you a way to fightâ€"instead of passively suffering “the slings and arrows of outrageous fortune†as Shakespeare put it, advocacy lets us “take arms against a sea of troubles, and by opposing, end them.â€
Ms. Comstock-Rick told how Australia’s leadership took a 6 month learning period to educate themselves on Somatic Cell Nuclear Transfer (SCNT), so they could vote carefully on the issue. (After studying it, Australia approved it.) How very different from the way legislation to criminalize SCNT was shoved through the House of Representatives, passing the Republican-controll
Some one talked about CRITICAL PATH at the National Institutes for Health. I believe it has something to do with “fast-tracking†research, but once again, sigh… could somebody explain it to me, slowly, in small words, please?
I liked the breakout panels, (like the disease “Spotlights†at the ICOC meetings): science is tough, and things make more sense if I can connect it to real people.
For instance, at the neurological disorders breakout panelâ€"we had Shane Smith, Geoffrey Macklis, Steve Burrill, Ole Isaacson (a scientist who had published more than 200 papers!) and an advocate named Loren Eng.
Moderator Steve Burrill shared a fascinating short conversation he had with Bob Klein.
“So, before Prop 71, I said to Bob Kleinâ€"Bob, let me see if I understand this. In a state in which 35% of the citizens do not speak English as their first language, you are going to offer a complicated medical science proposition; when the Governor said there should be no more bonds, you are suggesting a $3 billion bond issueâ€"to a state in the middle of an economic recession?â€
“And Bob smiled and said ‘Yes!â€
Steve paused. “Now that’s optimism-- and that plus hard work is what it takes to make things happen.â€
Then he introduced Loren Eng, a patient advocate with similar idealism, and the courage to follow through for positive change.
Ms. Eng’s daughter, at 18 months, was smiling, talking, laughing, walkingâ€"and then she was diagnosed with Spinal Muscular Atrophyâ€"and all those abilities were gradually lost.
SMA kills by respiration failure and muscle weakness. Children who have type one SMA often die before the age of 3 years old.
A little friend of mine, Pranav, has SMA. We have never met, but we have talked on the phone, and this is the boy whose Mom Kavitha took him to see Elmo, and we ran pictures of him earlier, remember? Pranav is four now, and every time he gets a cold, his mother sits up all night with him, trying to keep him alive.
There is no cureâ€"and yet this disease has been called the “most scientifically tractable†by the NIH.
Apparently, SMA is caused by the absence of a single gene.
The SMA Foundation, led by Ms. Eng, is the largest single SMA foundation in worldâ€"40 drugs were tested in one animal facility aloneâ€"and the group has funded $40 million worth of research.
They developed an animal model â€" a $3 million ratâ€"and now they are having a “rat race†hundreds of SMA rats, trying to see which one lives, and which ones do not, and thereby they may save the lives of little children who currently have almost no hope.
The overall objective?
Synergy. Different groups of scientists and activists can work together: share strength, knowledge, both successes and failuresâ€"knowing what does NOT work is vital, so others will not waste time, going down a useless road.
Dr. Shane Smith, formerly Science Director for California’s Prop 71, now works with the Children’s Neurological Solutions group. It started, he said, as “a group of moms who didn’t think it was okay that their kids were not getting better.â€
Shane mentioned four important goals for neuroscience:
Shane spoke about how stem cells can somehow find their way to the injury site, as noted by Stanford’s legendary Dr. Irv Weissman.
He talked about Dr. Hans Keirstead’s work developing high purity nerve fibers, and Dr. Evan Snyder’s endless contributions to the field.
When it was ALS specialist Dr. Robert Brown’s turn to speak, he said a lot in a few words:
1. An elderly gentleman asked, “How important is that we donate our brains to science?†The man appeared very old; he was asking, perhaps, so he might change his own will.
Dr. Bob answered:
“It is just thunderingly important. We need a library of brains, thousands of them, so we can study and figure how to save livesâ€"that’s a vital questionâ€"thank you for raising it.â€
2. He said the NIH gets $29 billion a year, to take on every diseaseâ€"and the Iraq war is costing us hundreds of billions of dollars.
3. On a note of optimism, he stressed that nobody has all the answers, and that we as advocates must “never take no for an answerâ€.
So much, so much! Tantalizing hints, sparkles of interestâ€"there was something called the CAMPAIGN FOR MEDICAL RESEARCHâ€"Steve Burrill is part of it. I need to find out about that.
Peter Kiernan was there. I heard a story about him.
Dana Reeve had called for Peter to come to the hospital to talk with her. And the widow of Christopher Reeve asked him to carry the work forward, to lead the Christopher and Dana Reeve Foundation.
He said he would do what he could, and she said thank youâ€"and the next day, she died.
Here he was, keeping his word.
Conferences are valuable in so many ways: like allowing friends to meet and hug and shake hands again, people like ace stem cell scientist Dr. Jeanne Loring, who just became director of Scripps regenerative medicine programâ€"I felt absurdly proud of her accomplishment, as if I had done it myselfâ€"pretty soon, I told her, I will need an appointment just to say hello!
Dr. John McDonald of Kennedy Krieger spoke about the vital importance of exercise for the paralyzed. “We must maximize the physical health of the body-- or there will be no recovery,†he said. Major rehab is needed, not just an hour here or there.
To the obvious question, who is going to pay for this, he pointed out what everybody in America knowsâ€"the current system is not enough. Long term health care is needed. Medical insurance needs to be better funded.
He spoke about pragmatic goals, finding cures piece by piece rather than a silver bullet approach: for instance, he said, sensation would be easier to recover than motion control.
And if we could regenerate even part of a damaged spine of a paralyzed person, 20% of the nerves across the injury area, partially connecting brain and bodyâ€"might be enough.
We need to be aware, he said, that “medicine is riddled with obsolete assumptions.†I took that to mean, keep fighting for cure and don’t be discouraged, because no one can tell how or when cure will come.
Dr. John Kessler spoke about the inner world of the spine, the environment, the niche of the nerve. That is huge because if you put a person in a room full of poison gas, they tend to dieâ€"and putting new nerves in a spinal system which attacks them does no good. There are things called “inhibitors†which cause problems, blocking the injured spine from healingâ€"apparently we must inhibit the inhibitors!
Alan Jakarno organized a poster sessionâ€"not on the scientific experiments, but on the bioethical issues involved.
Venture capitalist Beth Kleiner Perkins explained how venture capital helped create industry, crucial to “turning stem cells into cures†like California’s CIRM motto, (which my son Roman suggested, in case you did not know!); how it works (if I understand correctly) is that if a venture capitalist raises one hundred dollars for new business, they keep twenty for themselves. They make a profit, and a new company is born.
Does it work?
Biotech has contributed over $90 Billion to the economy, and created 275,000 jobs.
“Harvard,†said Ms. Perkins, “We are being smart with your money!†She laughed, but she meant it. Apparently, Harvard lives off investments, and her company helps it decide where to put their bucks.
Joe Riggs, the founder of Students for Stem Cell Research, gave out awards to outstanding student leadersâ€"like Laurel Barchas from the Berkeley, California chapter (Laura is always doing something good: in addition to helping develop a stem cell education program with different levels, Junior High through college, she organized a Christopher Reeve memorial vigil I spoke at recently)â€"and Laura C. Meyers, student leader who had a funny story to tell.
It seems students at one college science lab wanted to call the White House about the Stem Cell Research Enhancement Actâ€"but they could not use the lab’s phones, because it is illegal to use anything connected with a Federal dollar to advance non-Presidentially-
However, being inside the lab, the reception was bad. They could not get through, so the students hung out of the windows making phone calls to the White House on their cells.
Ralph Dittman won an individual Outstanding Advocacy awardâ€"a worthy recipient from Texasâ€"Tommy Lee Jones’ football teammate, and a great team player for our endeavor. Among Ralph’s many contributions is an outstanding DVD primer on stem cell research advocacy.
The National Advocacy award to Michael J Fox, whose new group Cures and Hope USA, begins with the belief that “our leaders must not play politics with cure researchâ€. Michael spoke from the video screen.
It is hard for me to remember, sometimes, that patient advocates like Mr. Fox are still patients themselves. Every action he gives is at a tremendous personal cost.
John Hlinko, veteran political activist who began StemPac, shared a lot with our table, including an addressâ€"www.stemcellcandida
The national student advocacy award went to wheelchair warrior Jeff McCaffery of Missouri, who made an impassioned plea for the civil liberties of cure research.
“Our freedom is at stake,†he said, “as victims of disease, we are enslavedâ€"prisoners of our bodies. Our freedom is compromised, but our freedom will be defended. Never will we accept the tyranny of diseaseâ€"freedom is never free, but it is always worth the fight.â€
And then the Governor of the state of Massachusetts walked into the room, side by side with Bernie Siegel.
Deval Patrick is African-American, built like a pro-football player, good-looking, verbal, friendly-- and the first thing he did in office was to push for one billion dollars in stem cell research!
“This is not a photo-op,†he said, when invited to the microphone, “This is a request for help. That billion dollars is not a done dealâ€"we need the help and cooperation of every person in the room.â€
Afterward, I went up and infringed on his space a little bit, just long enough to shake his hand, and tell him the patient advocates would be there when it counted.
And I know I did not lie.
We will work together. As Christopher said, “We will move forward.â€
And we will prevail.
P.S. I almost forgot! New Jersey has only 21 days left before they vote on a $450 million stem cell research bill!
Here is some information about itâ€"it is, of course, being slammed by the opposition.
The only poll I know about showed 49% in favor, and 39% opposed. We need to get 51% for the bill to become law, so every little bit counts.
Please consider chipping in $21 to the address belowâ€"it is $21 bucks because there is only 21 days leftâ€"I did the same, of course.
$21 for 21 Days VOTE YES for Hope Please Support Our Campaign for Life-Saving Treatments and Cures by Contributing $21 TODAY
CLICK HERE TO VISIT OUR WEBSITE AND MAKE AN ONLINE CONTRIBUTION:
About NJ for Hope: The New Jersey for Hope political committee is a group of citizen activists, medical professionals, and elected officials who have come together for the purpose of advocating the passage of the public question that will appear on the November 6, 2007 ballot statewide asking New Jersey residents to keep New Jersey the leader in the nation in finding treatments and cures to diseases that affect us all. If passed, New Jersey will invest $45 million a year for the next ten years towards stem cell research grants. Campaign Updates: This weekend, the Bergen Record ran an Op-Ed authored by Carl Riccio, a longtime stem cell research advocate. In it, Carl makes a compelling argument for Voting YES on November 6th and what is at stake for Carl and all of us. Click Here to Read Carl’s Op-Ed The Opposition: Anti-Cure groups are doing what we expected them to do â€" lie, distort, and fear-monger. Their utter disregard for the Carl Riccio’s of the world is truly shameful, amoral, and anti-family. They are currently running radio ads to spread their misinformation.
Questions: do you have a friend in New Jersey?
Do you belong to any organizations which support stem cell research?
Consider giving them a call. ASK THEM TO WRITE A LETTER TO A NEW JERSEY PAPERâ€"support from local folks means so muchâ€"and dollars from everywhere, too!
We only have three weeks to raise stem cell research consciousness in and New Jersey-- and half a billion dollars hangs in the balance.
Here is their headquarters: take a look, please.
Don Reed
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