STEM CELL BATTLES

“If someone saves a drowning child, we call that person a hero. But if their hard work contributes to the saving of millions of lives, and eases the suffering of billions more—we have no words, except one—advocate.

 

“And that is what you all are: advocates.”

 

It was lunch, the second day of the first State of Stem Cell Advocacy (SOSCA) conference, and I was being allowed to interrupt the meal of a hundred fifty people who had been talked at steadily for almost two days.

 

And what days they had been!

 

Anything great begins with deeds done invisibly…. As the traveler sits in the shade of a tree planted by someone they will never know.

 

Like Jacqueline Hantgan, who deserves a special degree, CQ, for Conference Queen, for all the hard work she did behind the scenes to make our confabulation happen. When I think of  “J”, I will remember seeing her one day in the office of Americans for cures. She had a cell phone wedged between her shoulder and ear, another in her left hand—while the right hand flew across computer keys.

 

I had been a little worried about our first speaker, Dr. Renee Reijo Pera, MD, PhD, who was to start us off with “Stem Cells 101”.

 

Now consider what that could mean, an eight AM lecture from the head of the Stanford Stem Cell Research  Department.

 

I had heard Dr. Pera speak before, to a group of her fellow scientists. I understood about six words in twelve—scientists talking at the highest level can be almost unintelligible.

 

Even today, after 14 years in this business, when I hear scientists talking fast, it is like hearing racecar mechanics Porsche versus Maserati fuel injection—in Italian.

 

But not this time. Every word and slide was chosen for clarity and communication. She understood her audience: we “in-betweeners”, not scientists ourselves, but advocates who must understand the important outlines: to share them with folks who have no background in stem cell research—and are not sure they want any.

 

She got the ultimate speaker’s compliment—“that first scientist was good; I could understand what she was talking about”—overheard in the restroom.

 

I was in the back of the auditorium, frantically typing notes—unfortunately, my laptop died on me, so I may never know what I was “learning”--. I lost sixteen pages of single-spaced notes, argh!

 

But Dr. Pera’s common-sense conclusion touched everyone, when she said there was no contradiction between her religious faith and her work as a scientist. She mentioned her Mother, who was no longer with us, but who would have been furious if her daughter did not go to church.

 

A simple little story, just a couple of sentences at the end of her speech, but it held a healing warmth.  

Amy Comstock Rick, the new President of the Coalition for the Advancement of Medical Research, brought the nation into the room, reminding us that we are strongest as America-- and without saying it in words, also reassuring us that the strongest advocacy group of all would be there fighting beside us, all the way.

By the way, is it just me, or are Parkinson's advocates the toughest fighters? Naturally I have a special fondness for my fellow spinal cord injury family advocates, and JDRF is matchless for their organization-- cystic fibrosis folks really know how to underscore the importance of the effort--everyone has their own strengths, of course-- but it just seems to me that when the going gets really rough in the trenches of political and advocacy warfare, you really want to be sure you have a couple Parkinson's folks with you-- they just won't let you down.

Co-directors of Americans for Cures Amy Daly and Constance McKee spoke next, welcoming us.

 

Constance is completely at ease behind the microphone, poised and articulate, a natural Mistress of Ceremonies.  Amy Daly’s magic is the one-to-one personal contact, at which she is unmatched. But in public speaking, she is genuinely anxious to pass the mike to someone else.  Normally, to get her to make a speech is like pushing someone toward a dentist chair.

 

But they were a dynamic duo up there, Constance always ready to go, and Amy easing us gently into the day—and then our keynote speaker stepped out onto the stage.

 

Bob Klein.

 

I have heard Bob deliver formal speeches (not counting the ICOC meetings) maybe ten or twelve times, and every one is different.

 

But there is always one point he makes, which I never understood.

 

It was something about the Medici,  an old Italian political family. He always talks about this, and I never really got it. Until today.

 

The Medici established a scientific organization.

 

Until then, scientists were always at risk of being jailed or killed as witches or whatever; the “science” had to be approved by the ruling politicians and religious authorities of the day.

 

Instead, the Medici set up something called the Academy of Experiment, where science was proven by experiments, verifiable facts, not ideology.

 

Afterwards, I hunted up a computer, and was astonished by what I found.

 

Look up the Medici family in Wikipedia:

 

“In 1657, together with his brother Leopold, Ferdinand established the Accademia del Cimento, or Academy of Experiment, a forerunner of more permanent scientific academies, such as the Royal Society of London (1665) and the Royal French Academy of Sciences (1666).”

 

There it was—the beginning of modern science—and, perhaps, the inspiration for the California Institute of Regenerative Medicine?

 

The entire conference was like that: the speakers gave you tons, and also left you wanting   more.

 

Panels of staggering expertise: like Dr. Arnold Kriegstein, director of program of Developmental and Stem Cell Biology at UC San Francisco; Dr. Jay Levy who has published over 450 articles on infectious disease; Dr. Jeannie Fontana, Executive Director of Patient Advocacy at the Burnham Institute for Medical Research, and Dr. Alan Trounson, the President of the California Institute for Regenerative Medicine—that was just one panel--- these folks alone could have run the whole show!

 

Bernie Siegel took us on a 45 minute tour of the advocacy adventure, and at the end of it, everybody was still smiling.

 

Bernie himself is an amazing man, impossible to dislike. He greets every individual as if he had traveled three thousand miles just to meet them.  He also makes things happen, not only as an organizer, but as an advocate himself.

 

His advocacy began when he challenged the Raelian cult in court, when they claimed to have cloned a child—Bernie filed suit, saying, okay, produce the child, he or she will need medical attention-- and the alleged child suddenly was nowhere to be found.

 

It was Bernie who brought Christopher Reeve’s speech to the United Nations, helping to prevent the international ban on advanced stem cell research sought by President Bush.

 

And every year, he puts on a wonderful stem cell research meeting.  He was a key organizer of Raymond Barglow and Idelle Detlaf’s First International Stem Cell Action conference in Berkeley. Then he went bigger,  involving Stanford itself—then he cooperated with Harvard University for the next one—and then, this year (in September, start planning!) it will be in Wisconsin, where America’s embryonic stem cell research began.

 

I asked him, quite seriously, how could he possibly top that?

 

He said he was thinking about having it on two continents simultaneously—and he is not joking...

 

 

Research policy in three states was ably represented by Mark Burton of Michigan, Brad Kemp of Kansas, and Donn Rubin of Missouri.

 

Talk about three advocates up to their necks in the dust and blood of political warfare!

 

I am hoping Donn Rubin (leader of the Amendment 2 struggle in Missouri) will write a book about that effort: he has confronted the naked face of hate. Imagine opponents who would stoop so low as to give out plastic models of fetuses to children at county fairs, telling them, this is what the scientists want to experiment.

 

As Brad Kemp put it, “We are up against people who will say absolutely anything.”

 

Mark “Mr. Michigan” Burton could use your help. Contact him at info@stemcellresearchformichigan.org, or just Google Michigan stem cell research, and offer to write letters in support.

 

A personal video from Michael J. Fox sobered the room. I could not help but remember how athletic he had been, and now he could only control the shaking a little bit, by multiple medications.

 

Michael made the point that having a pro-stem cell President was not enough; we had to have super-majorities of supporters in the Congress and Senate, if we were to spend the kind of money required to bring cure for chronic disease.

 

A film, “Life is for the Living” was played, but I missed it. (There was just so much going on, you could not possibly see everything!)

 

However: I did see a two minute “trailer” of a film in the process of being made, about Tricia Riccio’s son Carl, a champion athlete who suffered a spinal cord injury. His mother has since made finding a cure for him her life work—this is a movie that should be made. More on them later.

 

The show was stolen the next day: by a speaker’s speaker: Steve Allen.

 

He spoke on “Talking through the media”, showing how to simplify, share, and shape your message, so it could weave through the media minefield.

 

Steve Allen is not only brilliant in showing you how to shape your message, but he makes you enjoy the process—so it is branded in your brain in a cheerful way.

 

He would make a point, and then show a video clip to illustrate it—sometimes the mistakes the professional politicians made were so hysterical (and reminiscent of our own) that we laughed till our stomachs hurt.

 

Stay on the offensive, he said, without being offensive!

 

Presidential contender Senator Bob Dole, with his wife beside him, were being interviewed by Katie Couric on the “Today” Show.

 

He was there (according to his plan) to promote a book he had written.

 

Ms. Couric asked him about his ties with the tobacco industry.

 

Instead of saying something like, “In my book, we talk about the importance of maintaining independence as part of the Democratic process”, he got completely rattled, and started essentially calling her names, saying she was part of the liberal news media.

 

She quoted a Republican anti-smoking authority who considered Senator Dole “in the pocket of the Tobacco industry”, and Dole said he was infected by the liberals too.

 

The only mention of the book was by his wife, Elizabeth, who said brightly, “Let’s talk about the book,” and was ignored by both.

 

Whatever message the Senator had, stayed with him—presumably in his pocket.

 

Persuade, don’t educate, said Steve Allen.

 

He showed a clip of Michael Chertoff after the Katrina disaster—disaster not only in the natural catastrophe sense but also in the miserable response to it—but Chertoff’s handling of the situation was magnificent.

 

When asked if he should be fired for his incredibly poor management, Chertoff replied that “there will be time enough to look back later, but right now we are focusing on this unprecedented emergency”—he stayed on message.

 

I had to leave before Harvard Stem Cell Institute Director Brock Reeve’s talk, to get ready for my own—but Gloria took notes, and when we talked again she told me that the Harvard Stem Cell Research Institute was not just one college but eleven institutions, medical hospitals and research centers.

 

On a personal note, if you ever have the chance to meet Brock Reeve in person, I guarantee you will remember him with a smile. Let me tell you why.

 

The speakers went out to dinner the night before, and since I never pass up the opportunity for free food, naturally I attented—and had the delight of sitting across the table from Brock Reeve--  who was seated next to Bob Klein.

 

Tricia Riccio was sitting on one side of me, (Gloria of course on the other) and at one point when Tricia saw who was on the other side of the table from us, she whispered “Great to be a fly on this wall, huh?” She was thinking the same thing I was, that she and I would just sit quiet and listen to these two, pick up whatever useful tips we could.

 

It seemed like a situation where Bob and Brock had a private conversation, leader to leader, and understandably so. If Bob has a chance to talk with anyone, he invariably focuses in, as if that person was the only one in the room.

 

Except it wasn’t like that. From the first, Brock included everyone, easy and natural.

 

In a panel which should have been titled “Three M’s for Messaging”, Paul Mandabach of Winner and Mandabach, Richard Maullin of Fairbank, Maslin, Maulin and Associates, (both firms had worked on Prop 71) and Richard Martin who managed the campaign of stem cell champion Claire McAskill shared expertise.

 

Keith Proctor of Americans for Cures moderated the panel with grace and charm, and the three spokesfolks could have filled a day or two valuably.

 

But I must confess, at this point my head began to nod. I was by now on information overload, and the pen skipping across the page would slip and skid…

 

Still I heard some amazing things anyway.

 

At one point Bob Klein spoke from the audience, saying that the language of Prop 71 had gone through 200 drafts!

 

Paul Mandabach talked about framing the issue—like painters put a wooden frame around their art so your attention is focused on what is important—so what is the important issue we wanted to frame in Proposition 71?

 

Cures.

 

Everybody knows somebody who is suffering from an incurable medical condition.

 

So, the campaign focused on the need for cure.

 

They showed ads from the campaign, one with my buddy Ben Kaplan (yay, that’s Ben up there!) and some warm and friendly ones from great scientists like Irv Weissman.

 

Crucial for credibility were the patient advocate groups.

 

The food was served. Tricia, Beckie McCleery of Texas, Constance and I were at the front.

 

And I did my first power point. The clicker worked!

 

 You can pretty much guess what I had to say: I talked about techniques that worked, and the things that didn’t, as we struggle to pass good laws, and defeat bad ones.

 

The fifteen minutes flew by—at least for me—and no one threw anything, so I assume the audience survived as well. (If you want to suffer through it, I think it will be posted on our website, www.Americansforcures.org, but not sure when.)

 

Then Tricia spoke, about New Jersey, and why their bill did not pass—and about a promise she makes her paralyzed son.

 

Every day, when she goes out to work, she kisses her son goodbye, and says:

 

“I am going out to find you a cure.”

 

See why that has to be a movie?

 

Beckie McCleery, a warrior friend, and the co-founder of TAMR, Texans for the Advancement of Medical Research spoke, about the struggle in Texas, sharing the intense political maneuvering that had to be done, just to keep the research legal in that state.

 

And how about a 50 State Strategy?

 

Constance McKee stepped to the mike.

 

I always feel proud of us when she speaks, because she has so much intellectual substance. There is so much there, there.

 

Never a wasted word, no sidetrips in ancient history, just where we must go if we are to win—she has a vision.

 

She wants Americans for Cures to be a gathering place for advocates, including our website, which she smilingly calls a “one-stop-shop for all your advocacy needs”.

 

Constance is the person who came up with the slogan, “Pro Family. Pro Cures.”

 

My wife picked up one of the t-shirts with that slogan, and said: “That speaks to me. I like anything which talks about the family.”

 

The conference was a joining of old and new.

 

Friends we had known forever, new folks we had just met—but seemed to recognize:  like cells that fit because they are blood of our blood, bone of our bone.

 

A family of advocates.