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Posts Tagged ‘California Institute for Regenerative Medicine’

THE GREATEST STEM CELL PROGRAM IN THE WORLD—under attack, again!

By Don C. Reed

Few institutions are more beloved–and more often attacked– than the California stem cell research program, the California Institute for Regenerative Medicine (CIRM).

For patient advocates like my paralyzed son Roman Reed and myself, the $6 billion program is like nothing else on earth: an institute solely designed to bring cure to chronic conditions, often called incurable. Every time I attend a CIRM public meeting, I feel a sense of disbelief, that California was able to make this happen.

Not without opposition! Lawsuits from the Religious Right tried to shut it down; opponents of “big government” wrote countless op-ed pieces opposing our program– well-meaning legislators tried to micromanage it. A small cottage industry of critics emerged: a mixed blessing. The same endlessly-quoted handful of folks offer constant negativity, but also suggestions for improvement, some of which have been adopted.  

The most recent threat comes in the form of a study:  “Committee on a Review of the California Institute for Regenerative Medicine (CIRM): Health Sciences Policy; Institute of Medicine”, available at: http://www.nap.edu/catalog.php?record_id=13523.  

While lacking power in itself, the study could become the basis for a new law  to revise and re-do the California stem cell program, in defiance of the voters’ will.

The study begins politely enough, complimenting CIRM:

 “… enhances California’s position as key international hub of activity… enriching regenerative medicine everywhere… impressive research portfolio…exemplary training program…   translational projects (ready) for industry involvement.”

Unfortunately, the study then recommends radical surgery! The proposed “improvements” would not only overturn the program’s structure, but might even violate state law. CIRM is in our state Constitution.– http://www.cirm.ca.gov/pdf/prop71.pdf)

The study objects to the program’s board of directors, the Independent Citizens Oversight Committee (ICOC), a 29-member panel of experts, appointed by public officials. These board members, the study believes, have an automatic conflict of interest, meaning they could use their votes to benefit the colleges or businesses for which they work.  

“They make proposals to themselves…regarding what should be funded. They cannot exert independent oversight.”—Harold Shapiro, Chair of the study.

This is provably false.

Members of the ICOC may NEVER “make proposals to themselves”. They are prevented by law from so doing: board members may neither discuss nor vote on projects which could benefit their parent organizations.

Here is what actually happens. 

First, California scientists offer their proposals. These are evaluated by the Grants Working Group, (GWG), a panel with a majority of out-of-state stem cell experts.

Each project is scored, from 1-100. The grant proposals fall into three categories: essentially YES, MAYBE, and NO. 

At a public hearing, the projects are listed in order of scoring, on a big screen in the auditorium.  The various grant proposals are also divided by color, so it is easy to tell which is recommended for funding.

The board has read the proposals, posted  on the public CIRM website (www.cirm.ca.gov). They have been reminded which projects they may not discuss.

The chairperson asks: does anyone want to move a proposal up or down?    

In most of the cases, probably 90%, the ICOC agrees with the recommendations. 

But if a board member challenges the placement of a grant, then the CIRM’s scientific staff will give its opinions, pro or con. The scientist applying for the grant may also speak. The board makes comments, as do we in the public—our only chance to do so.

Example:  a recent disease team proposal was offered, a new way to fight Alzheimer’s disease with its terrible memory loss.

http://www.researchstore.com/technologynetworks/News/stemcells_wins_20_million_from_cirm_for_alzheimers_disease_program?productid=EF6D220C-8225-4A37-A21F-126572F21FD3

It was a major grant, a $20 million dollar project by Stem Cells, Inc., led by Dr. Frank LaFerla of UC Irvine. It had been rejected by the Grants Working Group. But I had studied the proposal and it seemed groundbreaking– the scientists had achieved unprecedented memory return in the laboratory mice.  So, in the three minutes allowed me (as for any member of the public) I argued in support.

The debate lasted an intense 45 minutes. When all sides had been heard, the chair called for a vote by the board. One by one they declared themselves: those who were eligible.     

When the votes were counted, the Alzheimer’s project had won. It is going forward today. Will it work? I don’t know. But we are going to find out.

To me, this is America at our best:  everybody having their say: the board, the scientists, the patients, the public: transparent government, out in the open, no secrecy.

Unfortunately, this is what the study would destroy.

“The board…should not be involved in day-to-day management. (It) should delegate day-to-day management responsibilities to the President…” — Section 3, page 11

What do they mean by “Day-to-day management”? Nothing less than who gets the money.  Giving grants for stem cell research is not trivial housekeeping; it is our whole program. Take that away from the board, and they might as well go home.  

And who does the study suggest should now make these crucial decisions, instead of our 29-member board, interacting with scientists, staff, patient advocates and the public?

Two people would be in charge, one of whom works for the other.

“The Senior Vice President and the President…decide on a final slate of proposals to submit to the ICOC for a “yes” or “no” vote on the entire slate.

…the ICOC (Board)… should NOT (emphasis added) be empowered to evaluate individual applications…..”)– Section 4, page 18

“A “yes” or “no” vote on the entire slate?   

If the Board can only make a blanket decision on several dozen projects at once, all the research projects going forward or none of them—what kind of choice is that? Are they going to say NO, and block all the research?    

Instead of our open process, funding decisions would be made in private; the public would be denied meaningful participation: and our Board reduced to a rubber stamp.

Wednesday,  January 23rd, is an all-day workshop (10:30 AM to 6 PM) to consider the IOM study.   To attend, come to the Claremont Hotel, 41 Tunnel Road, Berkeley, CA 94705.  Or listen to the audiocast at (800) 700-7784.  Participant Access Code: 279280

Information at: http://www.cirm.ca.gov/Agenda_2013-01-23/icocgoverning-board

Opinions may be sent to the Board Chairman Jonathan Thomas, jthomas@cirm.ca.gov

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UNCONSTITUTIONAL? Changes to California Stem Cell Program May Require State Vote

By Don C. Reed

It was just a small office conference room in the city of San Francisco, with clean white tables and simple chairs.

But on every table was a microphone.

And what was decided between the hours of 10:00 and 11:30 AM, on July 16th, 2009, could affect the lives of millions of suffering human beings.

Seated at the front table were Bob Klein, Art Torres, and Jeff Sheehy. Attending by phone were Duane Roth, John Reed, Joan Samuelson, Claire Pommeroy, Susan Bryant, and Francisco Prieto, and maybe one or two others I did not type fast enough to catch.

This was the legislative subcommittee of California’s stem cell program.

Today they would decide how to respond to an 84 page report from the Little Hoover Commission (LHC), a catalog of criticisms and suggestions for changes in the law. The report was titled: “Stem Cell Research: Strengthening Government to Further the Voters’ Mandate”. (Please note that word “Further”– it will be important later on.)

The meeting began with a shock. Bob Klein relinquished the chairmanship of this important committee, passing the baton to vice-chair Art Torres.

Former California Senator Torres is of course no stranger to the politics of hope. He has fought for people’s rights for decades, including work with Cesar Chavez and the United Farm Workers.

But nobody knows the stem cell program like Bob Klein. True, he would retain the chairmanship of the larger governance board, the Independent Citizens Oversight Committee (ICOC), but why give up this small but crucial responsibility?

Four words: “my wife’s health challenges” was all he said, but the room went still. Danielle Guttman-Klein works on her environmental programs with the same enthusiasm and dedication her husband brings to stem cell research. When you meet her, vibrant, athletic, a smile like the young Doris Day– it is hard to believe she is battling cancer.

New chairman Torres said he had not yet voiced his opinions on the report, and would hold his comments till after everyone else had their say.

Bob continued. Some of the Little Hoover Commission suggestions were intriguing, he said, worthy of careful consideration. Others “should not be on the table at all, or they might sweep everything away”.

CIRM Attorney James Harrison spoke. This is the man who helped Bob Klein write Proposition 71, so he knows it backwards and forwards. He works with Remcho, Johansen & Purcell, one of two law firms associated with Proposition 71 since it began. The other is Nielsen, Merksamer, Parrinello, Mueller & Naylor. Both firms provided documents.

There were three sets of changes suggested. In the 90-minute meeting, we could only discuss one, the most serious. Enacted into law, these changes would:

1. Cut our board of directors in half, from 29 members to 15.

2. Reduce board members’ terms to 4 years, instead of the current 6 or 8.

3. Let the Governor choose most of the board: 11 of 15 members.

4. Eliminate the Chair and vice-Chair’s statutory powers.

5. Allow the new board to elect the chair and vice chair only from its members.

How serious are these changes?

According to a public letter from California State Senator Dean Florez, Senate Majority Leader, these changes would “essentially re-write Proposition 71.”

They may also be unconstitutional.

Article II, section 10 (c) of the California Constitution sets guidelines for changing an initiative like Prop 71, the California stem cell program.

“The Legislature may amend or appeal…an initiative statute by another statute… only when approved by the electors unless the initiative statute permits amendment or repeal….” –emphasis added.

So they have two options:
1. set up another initiative to change the first, including a new vote of the people;
2. use whatever guidelines for change exist in the original law.

Option 1 is difficult. To “re-do” an initiative, the legislature has make up another initiative with the changes they want, get it approved by Assembly and Senate, (possibly the Governor? I am not sure) and finally present it to the voters—who may not appreciate this flouting of their will.

Option 2 is to use guidelines for amendment already in the initiative.

Does Proposition 71 have provisions to allow such changes? Yes, but with conditions.

“…Proposition 71 can only be amended by the Legislature “to enhance the ability to further the purposes of the grant and loan programs created by the measure”…(Section 8.) Amendments that do not further the purposes of the grant and loan programs created by Proposition 71 can only be adopted by another vote of the people.”—Nielsen, Merksamer, et al.

Remember that word “Further” in the title of the Report? That is a politically loaded term, since any new laws affecting Prop 71 must “further the purpose” of the initiative.

Would the first group of changes meet that standard, and “further the purpose” of the initiative?

In a word, no.

Proposition 71’s purpose was to make grants and loans to advance stem cell research, in a non-political way. That is clear from any reading of the Proposition 71 language, ballot materials, campaign literature, and the non-partisan legislative analysis provided by the state.

California voted for our program to be set up in a very specific way: so politics would not interfere with research for cure. Our families deserve the best medical treatments science can provide—not what is ideologically acceptable.

In Proposition 71 the power of selecting the governing board was spread widely, to prevent any individual from imposing political domination over the research.

Some of the LHC suggestions would politicize our program.

For example: on their suggested new and smaller board of directors, 11 of 15 members (73%) would be chosen by the next Governor.

What happens if that Governor was against embryonic stem cell research?

California has been fortunate in Governor Schwarzenegger’s steadfast support of the research. He has stood by our stem cell program again and again, even when that was not politically easy. In the history of medicine, he has earned a place of honor.

But another Governor might oppose the research. Last year’s national Republican platform called for the criminalization of embryonic stem cell research. A governor who supported that extreme position could easily “stack the deck”: choosing board members who would push the research into a direction not intended by the voters. Or, the new Governor might decide our state “can’t afford it”. With the power of the board, they could deliberately slow down the program–or reduce our funding, as was suggested during the LHC hearings.

The conversation began. (My comments, as always, are taken from memory and notes; if I mischaracterize anyone’s position, I hope they will straighten me out on the matter.)

To fight, or not to fight; that was the question, it seemed to me. Should the legislative subcommittee accept or reject these five most serious LHC suggestions?

Board member Jeff Sheehy appeared to regard the Little Hoover Commission as an opening position, details to be worked out later. He credited the California program as something wonderful, which should be continued on a long-term basis, and that meant having the flexibility to adjust along the way. He seemed willing to consider some of the LHC recommendations.

He also saw a need for change right now. For instance: patient advocates on the board cannot have substitutes, which wreaks a hardship. Joan Samuelson, for example, has Parkinson’s disease. It is sometimes difficult for her to deal with the condition as well as the work; she and other patient advocates should be allowed a substitute for board meetings when the need arises.

That is perfectly reasonable. But do we need to revamp the entire program to accomplish it? We could do what our governing board usually does, “agenda-ize” the problem, put it on the official calendar for discussion, and then work out an answer. That is what the ICOC is all about.

Jeff Sheehy questioned the large size of the present board, pointing out that it can be difficult to get the “quorum”: enough eligible folks to make an official vote.

Some meetings do have a little frantic scurrying around to get enough folks in the room. These are top executives, all with crammed schedules, and it is not always easy to get them together. But they cooperate, and it works out. I doubt there have been more than three or four votes that had to be rescheduled; this inconvenience seems a small price to pay, compared to the benefit of having some of the best minds in the nation working together. (To see the caliber of our board, go to http://www.cirm.ca.gov, and look up their short bios; I guarantee you will be impressed.)

Bob Klein spoke on the positive aspects of a large board of directors. Our 29-member board was patterned after the similarly-sized (26 members) University of California board of Regents. Our board setup allows a broad diversity of opinions, virtually guaranteeing better outcomes. Also there is a lot of work to be done; a smaller committee might not accomplish all the chores. As it is, the board’s ten patient advocates are spread thin. They must be represented on several committees, and are overworked; to cut their number in half would aggravate the situation.

Dr. John Reed noted that any changes should be considered carefully, because sometimes what seemed like even a common sense alteration could have devastating consequences.

That made sense to me. For our program, the ICOC board is like the hull of a ship, on which everything else depends; weakening that would be like drilling holes in the hull.

Major changes also meant possible lawsuits. Joan Samuelson, an attorney herself, reminded us how lawsuits delayed our program before, draining our resources, slowing us down almost two years. The opposition’s lawyers were sure to go over any change “with a magnifying glass”, as she put it. They would search for the smallest detail which could work to their advantage, any foot-hold that could allow them to challenge us in court, to delay or deny our research.

We had a telephone call from Spain, where CIRM President Dr. Allen Trounson had been speaking at the International Stem Cell Research convention. He spoke with delight of the reception the California effort was receiving from the world. “Unprecedented level of support,” he said, and the smile in his voice came through, even over the static crackle of the phone.

Finally, Chairman Art Torres spoke. He said he had worked with the Little Hoover Commission before; they had the luxury of proposing all manner of changes, after which they could “wash their hands of the matter.” But we could not do that. Whatever changes were made, we would be stuck with. In regards to allowing the next Governor to appoint 11 of the 15 board members, Art was not in favor of giving such power to one person. As for the size of the board, Senator Torres had served on many boards, all different sizes, from as small as 3 members to as large as 75—more than double the size of ours. His thoughts on the ICOC? A highly successful board, he said; it had vigorous discussions, made solid, well-grounded decisions—“and at the end of the day, you guys still manage to genuinely like each other!”

And now a motion was needed, to be followed by public comment, and the vote.

Bob Klein made the motion: that the legislative subcommittee should reject this group of changes on grounds they might be unconstitutional, or require another ballot measure. A suggestion was offered by board member Dr. Claire Pommeroy, that the words “on the basis of information received from counsel” be inserted into the motion. This was accepted by the maker of the motion as a friendly amendment.

Then it was public comment time.

David Jensen of the California Stem Cell Report noted that the position of the law firms cited (that the LHC proposals could be unconstitutional without a state-wide vote) was only a legal opinion; other law firms might study the same information and come to a different conclusion.

Fair enough: anyone who listened in on the Sotomayor hearings can vouch for the difference of opinions possible in any interpretation of law.

On the other hand, both of these law firms have been connected to the stem cell program since its inception. It is their business to keep track of every detail of any argument which might affect our stem cell program. Their arguments are backed up by solid legal precedent.

When it was my turn, I quoted Winston Churchill, who said:

“Democracy is the worst form of government, except for all the others”.

There is room for improvement in everything, from democracy itself to our stem cell program.

But it must be admitted the California Institute for Regenerative Medicine is doing a terrific job.

Even the Little Hoover Commission report begins by acknowledging the California program as the “envy of the world… The institute…has directed more than $700 million toward scientific exploration, in the process leveraging an additional $900 million in private and institutional money that has built new facilities, lured scientists to California and spurred growth in the state’s life sciences industry.”

In other words, Prop 71 has done exactly what it promised to do—only better. Not only did it advance stem cell science and the biomedical industry, but it even brought in an unexpected bonus of $900 million dollars!

Why should major changes be imposed on such an outstanding program?

Does the doctor say to a healthy patient, “Okay, you are in great shape—let’s do major surgery?”

As the old saying goes, “If it ain’t broke, don’t fix it!”

At last, everyone had had their say. A roll call vote was taken.

The first group of changes was rejected: 8-0, with one member abstaining.

What happens next?

August 6th is the next legislative subcommittee meeting, to discuss more aspects of the Little Hoover Commission’s report. As always, you are invited; see http://www.cirm.ca.gov for information.

On August 19th and 20th, there will be a meeting of the full ICOC, where the recommendations of the subcommittee will be discussed, and our governance board will take a position.

I will have to miss that meeting. Gloria and I are celebrating our 40th wedding anniversary by going to Paris. It is financially foolish, we can’t afford it, but we are going anyway. So while you folks are working, I will be in the city of lights, eating French pastry, and trying to work up my nerve to ride that rickety elevator up the most beautiful building in the world, the Eiffel Tower.

But in my suitcase will be the LHC report. I will study it every day. And, to steal a line from America’s favorite stemcell-supporting body-builder/moviestar/Governor: “I’ll be back.”

I would not want to miss the coming battle over the Little Hoover Commission’s proposed changes; it will be a long fight, perhaps our most difficult. The LHC report has gathered many (if not most) of the criticisms that have been thrown at us since 2004, seemingly accepting them all as gospel, and turned them into recommendations for change—to be imposed by law. This next stem cell battle will be like facing all the previously defeated challenges, again.

It is a trifle irritating. After more than a year’s hard work, Proposition 71 won the election. After almost two years in court after that, we beat the lawsuit challenges, including appeals all the way to the California Supreme Court. Since then, our program has survived who knows how many audits, investigations and oversight procedures—not to mention the seven bills previously offered to “improve” us– and now, another one, potentially combining elements from all the others?

Unfortunately, that would appear to be the situation. The LHC-begun law may not happen right away, but it seems to be well into the planning stages.

At a recent committee hearing for another bill (the excellent stem cell education bill, SB 471, from Senators Gloria Romero and Darrel Steinberg) Senator Elaine Alquist spoke about using one of her bills (probably the half-completed SB 343, which is presently about stem cells and intellectual property) to carry some or all of the Little Hoover Commission changes.

What does that mean for us, the patient advocacy community?

We will do as we have always done: study the bill when it comes, discuss it with friends, decide if it is a threat to the California research program– and then take part in the democratic process.

A Little Hoover Commission member told me that one of our options was simply to ignore them; I told him we would never be so rude—nor can we afford to be.

For this is no philosophical debate. This is binding law, intended to permanently alter our shining stem cell program.

The California Institute for Regenerative Medicine offers hope to all who suffer chronic disease and disability.

This is about people we love: like Danielle Guttman-Klein and my sister Barbara, both of whom have cancer, and my son Roman, who is paralyzed, and our little friend Pranav, four years old, who has spinal muscular atrophy—and millions of other folks, your relatives and mine, our friends, our neighbors, ourselves—this is for everyone.

The California program is worth every effort to defend.

P.S. Available at the meeting was an open letter from California Senator Dean Florez, Senate Majority Leader, and a member of the Little Hoover Commission. Portions of it follow below.

Senator Florez states:

“… I would like to note, for the record, my concerns regarding the (Little Hoover) Commission’s report on the California Institute for Regenerative Medicine (CIRM)…

“…the report recommends reducing the size of CIRM’s governing board from 29 members to 15 members and concentrating the power of appointment to the Governor, who would be responsible for appointing 11 of 15 members. The report also recommends stripping the power of the Lieutenant Governor, the Controller, and the Treasurer to make appointments eliminating the statutory duties of the chair and the vice chair….

“…the recommendations, if adopted by the Legislature, would essentially rewrite Proposition 71. (emphasis added, DR) In adopting Proposition 71, the voters specified the governance structure they desired and limited the Legislature’s ability to amend the law. Under Proposition 71, the Legislature may only amend the law to enhance CIRM’s ability to further the purposes of its grant and loan program. The Commission’s recommendations appear to be inconsistent with the voters’ intent and therefore could only be accomplished by proposing another ballot measure…

“…the Commission’s recommendations appear to lack a firm foundation. For example, when I asked (at an earlier meeting—DR) why a 15 member board was inherently better than a 29 member board, Commission members responded that an academic expert on non-profit governance had testified that the ideal board size was seven to nine members, but the expert himself stated that he did not have sufficient knowledge of CIRM’s operations to opine about the ideal board size for CIRM…

“…I am also concerned about the Commission’s attempt to shift power over the agency to the Governor. … CIRM was designed to be an independent agency. Proposition 71 therefore dispersed appointment authority to the Governor, Lieutenant Governor, the Controller, the Treasurer, the Legislature, and UC Chancellors. By concentrating appointment authority in the Governor, the Commission would undermine the careful and deliberate balance struck by Proposition 71. In a controversial area like stem cell research, such a change would threaten the independence that CIRM needs to ensure the success of its mission.

“Finally, I am concerned about the Commission’s apparent rush to conclude its report. As one member said at the meeting, five minutes and a sandwich is not adequate time for Commission members to absorb the information that was presented. While I appreciate the substantial effort that Commission members and staff put into drafting the report, I am concerned that due to its rush to approve the report, the Commission gave disproportionate weight to CIRM’s critics and did not consider a broader range of views on the complex issues that are the subject of the report…”

Dean Florez, Senate Majority Leader, State Capitol, Sacramento, California

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A GLOBAL SHOUT: How Will You Celebrate Stem Cell Awareness Day?

By Don C. Reed

September 23 is the world’s second annual Stem Cell Awareness Day (SCAD).

This year, we have a lot of reasons to celebrate. Just to name three:

1. President Barrack Obama authorized a relaxation of America’s restrictions on federal funding of embryonic stem cell research. The revised NIH guidelines have just been released; they are sensible, and can be worked with. I was worried, because the opposition had mounted a major national campaign to try and derail the research; but they did not succeed. Hope won; fear lost. This will help every state that has a program or wants to start one.

2. Despite relentless opposition, the California Institute for Regenerative Medicine (CIRM) continues to “go forward”, as Christopher Reeve always said. The CIRM has already awarded $761 million in research and facilities grants—and has brought in roughly one billion dollars more additional funding in matching grants and donations. An incredible 300 (three hundred!) published scientific papers resulting from CIRM-funded work brings us incrementally closer to cures for chronic disease and disability.

3. Assuming no last minute glitches, the world’s first human trials with embryonic stem cells will take place in a matter of days: Geron’s and Dr. Hans Keirstead’s long-awaited spinal cord injury effort, to try and ease the cruel grip of paralysis. (Readers of this column may remember this work was originally funded by California’s Roman Reed Spinal Cord Injury Research Act, named after the author’s son.) Although this first set of trials is primarily a safety test, the excitement is palpable; around the world people suffer every day, without the hope of cure, and now, for the first time, there will be actual official, verifiable tests of a way to repair the damaged nerves inside newly injured people…

So– how should we celebrate Stem Cell Awareness Day?

Last year, the main event of the first Stem Cell Awareness day was an Australian/Californian joint video conference, with scientists on two continent’s bringing the research to world attention.

And this year?

The California Institute for Regenerative Medicine (CIRM) is once more playing a coordinating role for Stem Cell Awareness Day activities — here is a note from Ellen Rose, who is helping to coordinate those events.

“Stem Cell Awareness Day will be celebrated on Wednesday, September 23, 2009. Events are being planned in California and around the world to engage the public in a variety of activities that raise awareness of stem cell research.

“CIRM is helping to coordinate a series of public events in California as well as offering an exciting classroom opportunity on that day for high school students and science teachers.

“Helping to educate and inform the next generation of scientists is an important part of CIRM’s outreach mission. Science educators are on the front lines of that broader effort and CIRM hopes to support these efforts by making stem cell researchers available to visit high school science classes to present a module on stem cell science and/or take questions during class on September 23rd.

“If you are interested in participating in this state-wide activity, and would like us to match a stem cell scientist with one or more of your classes, please email Ellen Rose at CIRM: erose@cirm.ca.gov. We will be matching local researchers with classrooms in the fall.”

There will be more from Ms. Rose and the California Institute for Regenerative Medicine as the day approaches.

Where will you be on September 23?

I personally plan to celebrate the day at the Genetics Policy Institute’s World Stem Cell Summit, in Bethesda, Maryland. I have no idea what GPI Founder Bernie Siegel has in mind by way of noting the day, but, knowing him, it will be special. For the silver-haired promoter of regenerative medicine, every day is Stem Cell Awareness Day!

If there is any way you can make it for the World Stem Cell Summit, folks, September 21-23, I absolutely recommend it. GPI stem cell events are not to be missed. I have been to them all, and every year I think, there is no way he can top this one—and then the next one comes along! Last year’s Summit was at the birthplace of stem cell research itself, Madison, Wisconsin– this one will be at in the hometown of the FDA, Bethesda, Maryland: at Johns Hopkins University, hosted by Maryland’s State University system.

A fact sheet on the event follows at the bottom of the page: for more information, click on http://www.worldstemcellsummit.com .

Now– what else can we do on September 23—Stem Cell Awareness Day—how can we make it memorable?

If you belong to a group, is there something you can do to mark the day? Maybe a little party, or that low-key fundraiser you have been meaning to do?

As you know, Proposition 71 was supported by more than 70 groups, large and small— medical, scientific, research or disease awareness groups– do you belong to one of those?

Could you contact the leadership, ask if they could announce Stem Cell Awareness Day, send an e-blast to the membership, reminding them about September 23rd?

Celebrating Stem Cell Awareness Day on September 23 is important. We need to remember how far we have come, and the attacks we have weathered. The hard work is paying off.

We are the patients and families, the scientists, doctors and therapists, the government leaders and taxpayers, everyone who believes that cure may come.

Think what we have accomplished.

Can you name any other medical advancement in the history of the world that has been so driven by patient activism?

It has been an uphill battle all the way: countering the forces of inertia, fear, and ignorance.

If you are an advocate, you know. Thousands of people labored long years to get us where we are today. Some are no longer with us. We should remember their sacrifice, honor their memory: appreciate the good that has been accomplished, the hope for what is to be, the future we can only imagine—as we fight to make it possible.

Think of Michigan, Texas, New Jersey, Connecticut, Maryland, Georgia, South Dakota and more—tremendous fights, some we won– and some we lost.

But we are going forward all the time. Even some of the battles we lost brought light as well as heat. True, we have not won in every state: not yet. Some states are disaster areas in terms of research freedoms, with actual jail sentences threatening stem cell scientists.

But it will not always be that way. The people of every state love their families exactly as we do—when cures start to come, leaders everywhere to face reality.

A movement has been born, which will one day touch the lives of everyone on Earth.

You are a part of that effort.

What will you do on September 23rd?

And the ultimate? If I can dream for a moment…

Do you remember the old great movie, NETWORK? In it, the announcer (Peter Finch, in an Academy Award-winning performance) asked everyone to lean out the window of their house, and yell:

“I’m mad as Hell– and I’m not going to take it anymore!”

My dream is quieter than that, but bigger, much bigger.

What if everyone who could be affected by stem cell research (everybody on earth!) would stop what they are doing, just for a moment, and just go outside, in front of their homes or places of work.

That’s all. Just go outside. Every street on Earth would be full. For a moment, all would be silent, as we realized the power of our numbers.

Visualize all of us, how ever many hundreds of billions of people that is, all stepping out of our houses, coming right out in front, families, friends, neighbors, all of us.

The smallest whisper would echo around the world, uniting us all. Think of that.

If we all just said the words of Christopher Reeve, very softly:

“Go Forward.”

If it came from all of us, those two words would add up, becoming a roar that would build and build until it could be heard on Mars—a global shout.

Even the most stubbornly obtuse politician could never ignore us again.

September 23rd. Celebrate Stem Cell Awareness Day. And make a little noise.

Contact your local paper, let them know what you have in mind. Remember, 70% of everything in a newspaper is “planted”: put there by the subjects of the article. Just make a one-page letter about your event, large or small. Call them first, tell them about it, ask if you can send them a news-release. They will always say yes, because they will at least want to consider it. Then you e-mail the news-release, and chances are, they will either send a reporter to cover your event, or at very least run your announcement.

In either case, you won; you advanced awareness of stem cell research.

And that is the purpose of Stem Cell Awareness Day: this coming September 23rd.

How could we celebrate this day? Drop a line to Karen Miner and me at stemcellbattles@aol.com, and share your thoughts.

Now, here is that Fact Sheet I mentioned, on the World Stem Cell Summit.

2009 WORLD STEM CELL SUMMIT: FACT SHEET

Conference Overview:
Presented by the Genetics Policy Institute (GPI), the Summit is hosted by Johns Hopkins University, the University System of Maryland, Maryland Department of Business and Economic Development, Maryland Technology Development Corporation and Maryland Stem Cell Research Fund.

With more than 150 sponsors, supporting organizations and media partners, the World Stem Cell Summit is the flagship, networking event, bringing together the founding visionary researchers, clinicians, business pathfinders, key policy-makers, regulators, advocates, experts in law and ethics to present compelling presentations, share information, and together chart the future of regenerative medicine.
The comprehensive, multi-track program covers all areas of stem cell science (hESC, adult and iPS), disease models, drug discovery, tissue engineering, scaffolds, bioreactors and nanotechnology. Five panels covering progress reports for cancer, diabetes, spinal cord injury and multiple sclerosis, Parkinson’s/ALS/Neurological Disorders and cardiovascular disease. Numerous panels cover commercialization, funding, economic development, Federal agencies’ perspectives, law and ethics.
Conference Co-Chairs
Curt Civin, University of Maryland; Chi Dang, Johns Hopkins University; Linda Powers, Toucan Capital Corp.; Karen Rothenberg, Maryland Stem Cell Research Commission; Bernard Siegel, Genetics Policy Institute
Sample Conference Speakers
Leading scientists: Irving Weissman (Stanford), Anthony Atala (Wake Forest), Ronald MacKay (NINDS), Sally Temple (NY Neural Stem Cell Foundation), Stephen Minger (Kings College), Jeanne Loring (Scripps Research Institute), Doris Taylor (Minnesota)

Key Policy Leaders: Gov. Martin O’Malley (Maryland), Gov. Jim Doyle
(Wisconsin), Bob Klein (California Institute for Regenerative Medicine), James Greenwood (Biotechnology Industry Organization)

Business Leaders: Mahendra Rao (Invitrogen), Alain Vertes (Roche), David Amrani (Baxter), Martin McGlynn (StemCells, Inc.), Michael West (BioTime), Jane Lebkowski (Geron), Ian Ratcliffe (Stemgent), Paul Grayson (Fate Therapeutics).

Medical Philanthropy: Alan Lewis (JDRF)

Conference History:
The 2009 World Stem Cell Summit marks the fifth annual summit presented by GPI. Past event partners include: University of Wisconsin-Madison Stem Cell & Regenerative Medicine Center, WiCell Research Institute, Harvard Stem Cell Institute, Stanford University, Baylor College of Medicine and the United Nations.
Conference Attendees:
The Summit will attract more than 1,200 of the most influential stem cell stakeholders from 25 countries representing the fields of science, business, policy, law, ethics and advocacy. 100 plus internationally renowned speakers will be present—producing a unique international network designed to foster collaborations, economic development, technology transfer, commercialization, private investment and philanthropy.

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