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"The only complaint we have about the World Stem Cell Summit," said Jonathan Thomas, chair of the California stem cell program, "is that there is just too much to take in..."

A wealth of information, inspiration and invigoration for advocates, the Summit was also just plain fun....

STEM CELL STATE, STEM CELL WORLD

By Don C. Reed

Did you ever see a Fred Astaire movie? One of the greatest dancers of all time, he made it look easy on film, light and graceful, as if gravity had no hold on him.

But an off-screen photo of Fred Astaire practicing shows the athlete dripping with sweat, his face contorted with agony. He worked so hard, to make it look like fun.  

So it is with Bernie Siegel, silver-haired founder of Genetics Policy Institute. At the World Stem Cell Summit, he seemed so relaxed and cheerful, always with an extra smile, always glad to see you. He just seemed to be out on a date with his lovely wife Sheryl, (they were in fact high school sweethearts) and they had just happened on this really fun party, to which they invited everyone.

Behind the scenes Bernie and his right hand man Alan Fernandez have been working like Fred Astaire trained, going beyond exhaustion for months to bring about this magnificent event.

And folks, they nailed it.

“The only complaint we have about the World Stem Cell Summit,”  said Jonathan Thomas, chair of the California stem cell program, “Is that there is just too much to take in.”

For three days, October 3-5, the Pasadena Civic Center was jam-packed with speeches, events, and representatives of every facet of the stem cell community.  

As Bernie put it, the folks with us were stakeholders:

 “… scientists, patients, advocates, business people, investors, educators, ethicists, policy-makers, and government representatives from around the world …”

Gloria and I arrived late Sunday night, and stayed until Wednesday afternoon, attending meetings non-stop until our plane had to leave-- and even then we did not see everything!  

I felt such pride in our field’s accomplishments, and especially the California stem cell program (technically called the California Institute of Regenerative Medicine, or CIRM)’s contribution.

The CIRM was everywhere. From President Alan Trounson’s wide-ranging overview of the latest research, to Don Gibbons’ calm but energizing remarks on science advocacy, to Geoff Lomax’s perspective on “State of the States”, to Chris and Lorraine Stiehl’s hard work on Stem Cell Appreciation Day which wrapped up the event, not to mention literally dozens more, you could hardly turn around without bumping into someone from the Golden State effort.

As Chairman Jon Thomas (JT to his friends, which means you) said:

“We would like people to think of California as the ‘Stem Cell State”. It is my intention to get across the message that stem cell research is California’s next Silicon Valley.”

Many advocates were there because of scholarships provided by CIRM, helping pay their expenses to participate. They received a bargain rate from the Summit.

Is that not the way the world should be, working together toward a great goal?

Key speeches were delivered in the main auditorium, with breakout panels in various nearby ballrooms.

For example, one of the most moving presenters was Major General James K. Gilman, of the US Army Medical Research and Material Command.

His 20-year career goal was to protect the soldiers who come home wounded from serving our country in places like Iraq and Afghanistan.

I had heard that the military had a $750 million program of adult stem cell research, but the grim reality was far less—a total of only $300 million over the next five years—and nothing in iPS or embryonic at all.

It was great for our soldiers to have someone as compassionate and dedicated as the General on their side, but infuriating to see he had so little money (not to mention freedom of choice) at his disposal. I wanted to hear more.

Outside Ballroom B, I met Dr. Wise Young, America’s beloved spinal cord injury scientist, just going in to the session on “HEALING OUR WOUNDED WARRIORS: the Armed Forces Investment in Regenerative Medicine”.   He was going in, and said, “Come on, this is important!”

But—there were seven panel discussions to choose from in that hour alone, and in Ballroom C was one I could not miss, on “FORGING RELATIONSHIPS BETWEEN INDUSTRY AND REGULATORS”—that affected the entire field. Regulators can say yes, no, slow down or speed up to all regenerative medicine.  

So, Wise went into one room, I took the other, and agreed to share notes later.

Inside Ballroom C was Ellen Feigal, Vice President for Science and Development of the CIRM , introducing a panel with representatives from:

The FDA… Dr. Raj Puri represented  the Food and Drug Administration (FDA). Also on the panel were  Michael Werner of the Alliance for Regenerative Medicine, and Dr. Melissa Carpenter of Carpenter Group Consulting. The latter two were experts in biomedicine, and how to advance that field.

I got angry at the FDA once, because of the nine year delay between the paralyzed rats that walked again (March 1, 2002, in the Roman Reed Laboratory) and the Geron human trials. How many years must it take to see if the embryonic stem cell process was safe enough at least to test on people?

So—I looked in the phonebook, and called up the FDA.

“Oh,” said the voice on the phone, “You want to talk to the ombudsman.”  (Remember that word, ombudsman.)

I talked to the ombudsman, who was an inbetween person, there to answer public questions. He set up a conversation with Dr. Stephen Bauer, head of the Tissue and Repair Department and overseer of the GeronTrials.  For a solid hour I got to ask  every question I could think of, and he gave me straight answers. When we parted, I was still frustrated by the delay, but I knew I was talking to a scientist, not a politically-motivated time-server.

To my delight, Dr. Bauer was in the room and we said hello afterwards.

Dr. Puri said that scientists who were close to a product, should contact the FDA early, try to figure out what tests must be done, as well as which ones could be avoided. The FDA had  to insure safety as well as efficacy, so that no one would be harmed by the invention, and that whatever it was, worked. So if you have a problem or concern about the 9,000 member FDA, call the FDA ombudsman.  

That piece of information could save you millions of dollars and years of delay, if you were a stem cell scientist or businessperson, trying to develop a new product.

BUT—said Andy Grove, the man who invented the giant corporation Intel, what if the FDA only studied safety, and did not try to determine efficacy at all?

A Parkinson’s sufferer, Mr. Grove spoke with the passion of someone used to overcoming huge problems with “out-of-the-box” thinking.

For myself, I like the FDA just fine as it is, except they need more money to hire more people—but still, Grove offered a revolutionary answer to a difficult problem.

Right now, it can cost more than a billion dollars (with a b) to bring a product to market—and even then, only about one in five new drugs or therapies succeeds.

This discourages investors from putting their money behind new products—and without investment, no products-- and no cures.

What was it like, nowadays, to try and raise money for a new stem cell company?

“Brutal!”, said Greg Bonfiglio of Proteus Enterprises, stating that every venture capitalist can now pick and choose between dozens of excellent proposals.

How it works is venture capitalists (VCs) invest money in companies with strong potential. The VC is an active partner, sometimes taking over the running of the company. The audience in this room were looking for ways to get capital from investers, without giving up too much control.

And if the obstacles could be overcome? Another piece of the puzzle of cure, and another panel….

“Economic Development: Stem Cells and Regenerative Medicine as an Engine for Economic Growth”.

Chair of that panel was Drew Lyall, Canada’s eternally cheerful redheaded director of that nation’s Stem Cell Network. His presentation benefited from California’s own Elona Baum, CIRM’s Vice President of Business Development, and Kevin Price of the Scottish Stem Cell Network, and Michael May, Centre for Commercialization of Regenerative Medicine, Canada.

On and on and on…Problems and possibilities were elucidated.

Example:  how does the opposition to the research gain so much power, when they are so plainly wrong?

One answer is the practiced simplicity of their message. They have only a few key phrases, which they repeat over and over, said Amy Adams, Geoff Lomax and Anthony Santarini of CIRM in their excellent article, “Social Media and stem cell science: examining the discourse”.

This points out the need for “the good guys” to have our own message points clear, short and memorable.

For example, if someone says, “We can’t afford to fund stem cell research”, we   immediately answer, “We can’t afford NOT to”—and it helps to have a few basic statistics handy, such as:

In 2009, America spent $1.65 trillion on chronic (incurable) disease. This is more than all federal taxes ($1.2 trillion) put together. It even exceeds that year’s installment of the national debt ($1.60 trillion). No nation can afford such costs—and it is why the economy is going down.  

Curing patients revives the economy.

Speakers described the Sherley v. Sebelius lawsuit (including Alan Jakimo, who wrote a terrific overview piece on it) attempting to shut down federal funding of embryonic stem cell research.

Briefly, many religious ideologues and anti-tax groups sued to block U.S. government funding of the research California supports. Most of these suits were thrown out, on the basis of having no “standing”, meaning they could not show any reason to claim injury.

But two adult stem cell researchers, James T. Sherley and Theresa Deishers claimed they would lose money if the government supported embryonic stem cell research. Every dollar spent on embryonic stem cells meant less money for them, they claimed.

This to me is nonsense: every scientist has to compete for limited funding—why should these two be a privileged pair, shutting down funding for an entire field just to benefit themselves financially?

My favorite quote came from Stanford’s Hank Greely:

“Their case is weak and should not win. So don’t worry—too much!”

We can never know for sure what will happen with an ideological court case. The Supreme Court is in my mind the most conservative ever…

Everywhere patient advocates came together, old and new.  Iwas delighted to have an interview in the book-length magazine, World Stem Cell Summit, where I was  described by Bernie Siegel as the “Grandfather of stem cell advocates”, and got to voice a few opinions, including:

“…scientists  must not be faint-hearted. If they choose to say, ‘Oh, no, politics!”, and run screaming from the room, they have only themselves to blame when their funding runs out...(because) if the educated do not participate, the ignorant will only too glad to make all the decisions.”  

Roman Reed was everywhere, zipping around on his powerchair, making new friends for the cause. He spoke movingly on the Battleground States panel, describing the California law named after him, the Roman Reed Spinal Cord Injury Reserch Act, (which provided $14 million for funding, and attracted $64 million in add-on grants from the Federal government and other sources) and had some great comments on the need for advocates to Twitter….  

Former Governor James Doyle predicted a major Congressional assault on science in 2012…  

Advocates Karen Miner and Susan Rotchy brought charm and beauty to the proceedings, the two wheelchair warriors listening and sharing. They would go back and report to their groups, passing out knowledge like ammunition, ready for the battles to come.

One new friend, Janet Otte of Minnesota, was just starting out on the advocate’s journey. She and her husband Mark had their own company to tend to, Otte Log Homes Construction, Inc, but now she listened intently to everything about the regeneration of nerves… because her son had suffered Traumatic Brain Injury.  I predict she will be a champion advocate, a real mover and a shaker, helping bring our loved ones closer to cure.

Important: if you attended the Summit, especially as one of CIRM’s ambassadors, it is vital to do two things:

One, write about your experience. Blog about it, send letters to your friends, and be sure and let Amy Adams at CIRM (aadams@cirm.ca.gov) know what you are doing—she is the blogger-queen of the California stem cell program, and needs to hear from you.

Second: you probably picked up a bunch of business cards at the Summit. I got 36. As soon as I got home, I started working on this column—and I sent a quick note, just a couple of sentences—to every one of the friends who shared a card.

Remember: a contact is only a contact—if you contact them.

Forge friendships, and find ways to keep in touch. We patient advocates are the emotional muscle of the regenerative medicine revolution. We must know each other, and make ourselves ready to work as a group.

Superstar scientists... I bumped into  Rudy Jaenisch in the elevator, the evening before it was announced he had just won the National Science Award, the highest civilian honor America can give.

Over there was smiling Jane Lebkowski of Geron, talking about the progress of the spinal cord injury trials.  Basically, “no news is good news”—because these are safety trials only.

ACT was there as well, on their own human trials, seeking to defeat a form of  blindness known as age-related macular degeneration.

You could have heard Michael West, who for my mind began the biomedical industry, founding Geron, ACT and now Biotime.

Chris Mason spoke on what science could become: “Cell Therapy Industry: Billion Dollar Global Business with Unlimited Potential.” Chris believes we should call our effort “Cell Therapy”, rather than “regenerative medicine”, as a more accurate and involving description. Say those two phrases—which one do you like better?

I served on two panels, BATTLEGROUND STATES and EMPOWERING ADVOCATES, both crowded with experts.

Even the audience was well-informed.

For instance, Donn Rubin of the legendary group Missouricures, came to the microphone to make the important observation that staying non-partisan had allowed his state to defeat its draconian restrictions.

Basically, his position is to ignore the Democrat/Republican distinction altogether, so the two sides can work together on stem cells, despite their differences on other issues.

Now I listen carefully to anything Donn Rubin says: great fighter, fine mind.

But there were two sides to that question.

President Obama invited stem cell advocates like Roman and myself to the White House, as he undid his predecessor’s restrictions. He made a promise in the campaign, and he kept it.

But Republicans made promises too.  Their Presidential platform contained a pledge  to ban all embryonic stem cell research, public and private…

A friend in either party is welcome, but where continued opposition exists, are we supposed to not mention it?

In Wisconsin, the new Republican-controlled legislature is trying to criminalize fetal cell research, to wipe out the research which defeated polio…  

And how did Republicans vote on the most important stem cell decision of all, the 2007 Stem Cell Research Enhancement Act? Remember, this is the bill one passed twice by Congress but vetoed by President George Bush.  It was the mildest of bills:  allowing funding for embryonic stem cell research on blastocysts that would otherwise be thrown away.

Who were our friends, and who used their power to try and stop the research?

One side was for, one side was against.

House Friends: 210 Democrats, but only 37 Republicans.

House Opponents: 16 Democrats, and160 Republicans (ten times as many!) voted against the research funding.  

Senate Friends: Democrats—45.  Republicans--16.

Senate Opponents:  2 Democrats voted no—and 32 Republicans...

Granted, we can never forget GOP stalwart supporters like Orrin Hatch.

But if one party strongly supports embryonic stem cell research, while the other (at least its leadership) overwhelmingly opposes it, that difference cannot be ignored.

And the American people? Mary Wooley of the award-winning organization Research!America was there to remind us that a recent major survey showed 72% of Americans today supported federal funding of embryonic stem cell research.

I shared a panel with Paul Knoepfler, America’s only blogging scientist, and Amy Adams, the excellent blogger from the California stem cell program, sharing thoughts with famed John Hlinko of Moveon.org, and Left Action—John started the session off with a bang, asking for thunderous applause—we all cheered—and sure enough, a couple folks came in from the hallway outside, to see what the fun was all about.

Hlinko said the advocates must not be afraid to be blunt. The opposition routinely calls us “murderers” for our research; John suggests that the anti-research principles they espouse should be labeled “pro-death”, not pro-life.

Children’s Hospital’s David Warburton gave everyone a smile by saying “the last time I was on this stage, I was a tree—literally, in the play, “Midsummer Night’s Dream”—and also something to think about, pointing out that Jerry Lewis, Marlon Brando, and Evel Knievel all suffered from a progressive neurological disorder—which Children’s Hospital at Los Angeles was trying to alleviate.

Arlene Chu, pioneer of spinal cord injury research, empowered a panel with the likes of Aileen Anderson, whose paralysis cure research has just begun human trials in Switzerland; and Sam Schmidt, the NASCAR racer paralyzed in a car crash and who has now dedicated his life to the fight for cure.

So much! What can you say about Brock Reeve, chair of the Harvard Stem Cell Institute, which is not one building, but a system of colleges, working to make real the dream his brother Christopher embodied? Brock not only gets the job done in terms of fighting for the cause, but is one of the most approachable persons on the planet, always taking time to meet new friends, and to underline their contribution.

Representatives from Massachusetts (Melissa Lopes), New York (Beth Roxland) and Connecticut (Marianne Horn) spoke about their excellent state programs.

From the audience, I had the chance to suggest honoring the late stem cell researcher Jerry Yang with a Connecticut grant named after him.

Jerry Yang  suffered from facial cancer. But even when the repeated operations took so much muscle from his face that it was difficult for him to speak, he still continued on, fighting for the research he so passionately believed in. He loved Somatic Cell Nuclear Transfer, called therapeutic cloning, and had in fact cloned the world’s first cow, trying to get a maximum of milk for hungry villagers.

How happy Jerry would have been to see the breakthrough by Scott Noggle of the New York Stem Cell Foundation Laboratory—not to clone people, nobody wants that—but to make a line of non-rejectable personalized stem cells.

And as Gloria and I dashed out through the sudden downpour of rain, on our way to the airport—who came dashing in the other way?  

 Bob Klein, the man who began Prop 71, was there to deliver a keynote address: “New Government and Philanthropic Paradigms for funding Stem Cell Research”.

I hate to miss any speech Bob Klein makes, because he is a fire-hose of ideas and inspiration, always something new.  

Fortunately, in a gift that keeps on giving, GPI has arranged that not only Bob’s but numerous key speeches will be available (free) online in the next few days…

And this was the World Stem Cell Summit: stakeholders sharing their best: working together in a fun but practical way, to make the cures come soon.  

Kerri Kimler of Texans for Stem Cell Research summed it up:

“Collaboration accelerates translation”.

Those three words summed up the stem cell extravaganza.

Oh, and one more:

Wonderful.

Originally posted to diverdonreed on Mon Oct 10, 2011 at 10:16 AM PDT.

Also republished by California politics.

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