Sunday, June 20th, 2010. I was waiting for my daughter, Desiree Reed-Francois, to swim in from Alcatraz, the old prison island in San Francisco Bay.
There was no reason to worry, I told myself. Desiree was in top shape. Associate athletic director for the University of Tennessee, she runs or lifts weights every day, takes part in full marathons routinely.
But there had been that article about great white sharks being spotted in the Bay....
She had reminded me that her chances of being attacked by sharks were less than mine of being struck by lightning as I waited for her.
But logic was no help.
See you in a bit, I said, careful not to say goodbye.
She smiled, tugged on the official yellow swimming cap. Then she waved and ran barefoot into the mob of participants, heading for the boats that would take them to the far side of Alcatraz. Without swim fins, they would have to swim halfway around the island just to reach the starting point.
Their voices merged into the hollow sound of footfalls on the dock, and then were gone.
Well, I told myself, get something done, work on your notes.
The 8th annual meeting of the International Society of Stem Cell Researchers had just come to town, June 16-19. I wanted to write it up, but there was so much to share--like summarizing an encyclopedia.
First, a huge appreciation: to the California Institute for Regenerative Medicine (CIRM), for providing free scholarships to the event for a handful of lucky patient advocates; to the ISSCR who accepted a lesser fee on their behalf; to CIRM governing board member Jeff Sheehy, who came up with this idea more than a year ago when the ICOC was discussing support of ISSCR for this conference, and to Bob Klein for ensuring it was implemented. Bob wants CIRM to go bigger on this program in the future, and has his
recommendations in for next year. Fingers crossed for a great future opportunity for California patient advocates...
The CIRM even offered travel expenses, but (being local) I had none, just some Senior Citizen Bay Area Rapid Transit (BART) tickets. Naturally I talked stem cells with excited fellow passengers on the way. It was amazing how they kept bringing up the subject, giving me such obvious openings as "Good morning", to which the only possible response was, "Yes, it is a great morning for the International Society of Stem Cell Research!"
Moscone West, where the event was held, is luxurious but practical, like a palace designed for work. High-ceilinged and immaculate, it had escalators that were easy to find, and a small army of helpful people making sure everything ran well. CIRM and the City of San Francisco jointly had provided access to the Moscone West meeting space--part of a competition in 2005, to be mentioned later.
As I entered one jampacked auditorium, it felt like the scientific equivalent of a watering hole in Africa, and lions nearby.
Alan Trounson, Trounson, President of the California Institute for Regenerative (CIRM), was greeting everyone. He advised the scientists to say "G'day" to Bob Klein, chairman of the CIRM, if they met him during the day.
"After all," he said; "The California stem cell program would not exist without Bob Klein, the ultimate patient advocate."
Five huge screens brought Trounson's cheerful face up close, and the sound system made every word clear and distinct, like a conversation.
There were only champions present... Jamie Thomson, inventor of human embryonic stem cell (hESC) research was there, as was Shinya Yamanaka, inventor of Induced Pluripotent Stem cell (iPS) research-- like Babe Ruth and Hank Aaron in the same room!
Although English is not Dr. Yamanaka's first language, his presentation was surprisingly followable. His slides were clear and brief, avoiding information overload. He understood the need for pauses when he spoke, tiny silences around complicated parts, so the brain could catch up. He described refinements to the iPS process, reprogramming skin cells, changing them into powerful embryonic-like stem cells.
In the evening, there was a chance to meet him personally at the Japanese consulate.
I got there early, taking a trolley car to an older portion of San Francisco.
Such a beautiful city....
In 2005, there had been a major competition as to which city would become the home site of the California stem cell program: the new center of world biomedicine. Many Golden State cities--Los Angeles, Sacramento, San Diego, Emeryville, Berkeley, San Jose and more had vied for that honor--all with legitimate claims.
A great debate was held, up and down the state. Anyone who wanted to attend the public meetings could watch and take part, and naturally I did. We rode on buses in the different cities, listening to spokespeople giving their presentation. Everyone did a great job, and it would be a tough decision for the governing board.
But Mayor Gavin Newsom did not send a spokesperson to make the case for San Francisco. He came himself, speaking without notes, bursting with knowledge and enthusiasm, making clear why no other city could possibly be the home cite for the California stem cell program--and he prevailed. (The next time you are in town, try to visit the CIRM during one of its many public meetings--just go to www.cirm.ca.gov and click on "Meetings' and take part.)
The Consulate building was spectacularly placed, literally "high on a hill above the bay", as Tony Bennett sang in the classic song, "I left my heart in San Francisco".
Unfortunately, the Japanese Consulate was built many years ago, before the American Disabilities Act (ADA) and was not wheelchair accessible.
But the people were friendly and helpful. Rod McLeod, Consulate Coordinator for Public Relations, and other kind folks were willing to lift and carry both Roman and his power chair (separately) up the flights of stairs. We plotted it out, step by step.
When Roman and Mom Gloria arrived from Fremont, I explained the situation--
Roman firmly said no-- had I forgotten how much his powerchair weighed? He would not put everybody through that, he said, and was about to turn the van around and go home.
In a moment to be remembered, however, Professor Yamanaka came outside and visited with Roman for a bit, standing on the street beside his van. Dr. Y. had a special interest in spinal cord injury, he said, having once been a neurological surgeon.
Meanwhile, back at the ISSCR...
Half of one floor was reserved for the biomed exhibitors like Biospherix Xvivo Workstation--"the World's Most Powerful Cell Culture Incubation System!" I am no scientist to judge its value, but the stem cell workstation did look solid, compact, and practical. Such equipment is needed to turn scientists' theories into useable therapies.
Cellartis was there, the Swedish company, and I enjoyed meeting Petter Bjorquist, who talked about a liver regeneration project his company was working on. In my country alone, an estimated 60,000 people are on borrowed time, hoping for a transplanted liver, without which they will die. But what if they could regrow their own?
The Node was a new "place for you to share news from and with the developmental biology community..."...for information, visit dev.biologists.org. Cross-fertilization of ideas is an irreplaceable component of progress, and The Node sounds like a great place for ideas and new methods to advance the field.
Or, "The Company of Biologists", where scientific magazines were sold--and the profits go to fund research... jeb.biologists.org
There was even a place where you could "request your free medium sample", or order tumor tissues--CELLnTEC advanced cell systems--www.cellntec.com.
So much more. The exhibitors portion alone really deserved a couple days to visit-- but the other half of that floor was what really drew me--the posters.
Scientists' posters (descriptions of their projects) are the heart and soul of every convention. Huge things, sometimes ten feet long and four feet high, posters are crowded with small print and pictures, each one trying to describe a different piece of the puzzle: the future of cure.
Katrin Grasme of Germany wrote on a question that has puzzled science for centuries: how do salamanders re-grow their own spinal cords? Lizards can lose a tail-tip and then re-grow it, which is interesting-- but salamanders can regenerate a severed spine--how do they do that? Turns out the little amphibian grows a tube of protective flesh (a neurotube) around the wound. Inside this tube, the cells at the injury site reprogram themselves to the embryonic stem cell state--like the induced Pluripotent Stem cell process ...
So many posters! On Thursday's poster session, I spent an hour just counting those which had to do with embryonic stem cell research--there were one hundred and one! And the next day they put new posters up...
And something new: a poster "teaser session", where each scientist was allowed two minutes to talk about his/her project. I did not get a chance to see this in action but the idea seemed great. The scientists, (having only two minutes) would be forced to organize their thoughts, and be clear....
Clarity is one thing San Francisco Bay lacks. Life-rich, jammed with plankton, Bay water is often a graygreen curtain that shuts off vision at about eighteen inches, so you can't see your hand in front of your face, and you never know what can pop out in front of you.
There are sharks, of course: most terrifyingly the great whites, predators of sea lions, of which several were in view, lazing on the rocks.
"Stay in the middle of the swimmers", I had advised Desiree, "don't be the one on the outskirts that gets picked off".
"Yes, Dad," she had said politely, just as if she had not heard my shark tips ever since she learned to swim at the age of nine months.
There were also other large sharks called sevengills, a species I knew well, having dived with them almost every day from 1972-87. I had been a professional scuba diver for Marine World Africa USA, an aquarium-zoo in Redwood City. I fed the sharks by hand, and that was fine, but I did have to fight a couple times.
Once a shark took my head in its mouth. It was just an investigatory nibble, quick grab and shake, no harm done, except to the wetsuit hood, which was trashed. The chocolate- brown shark let go of my head and moved away. Not wanting the creature to think that was acceptable, I called her back to me, wiggling my hand like a wounded fish, signal to be fed. When the shark got near I punched it hard as I could on the side of the head, the nostrils. It slammed against the wall, shot away, and gone.
I couldn't see any of the swimmers yet, just an enormous vessel cruising by in the distance. Get out of the way, I muttered to it, don't you know my daughter is out there?
The ship had giant letters on its side: MSA. I had no idea what that stood for, nor what nation it called home.
The ISSCR is the United Nations of stem cell research. So many countries were represented here, in addition to this year's host, the USA: Germany, Sweden, Russia, Spain, Finland, Austria, Australia, Argentina, Italy, France, Japan, Belgium, Britain, Brazil, Singapore, China and more were here, sharing knowledge.
What a delight to see again Dr. Fanyi Zheng of Shanghai, China. The inventor of "Tiny", the world's first iPS-made mouse, Dr. Zheng is not only a terrific scientist, but an ideal unofficial ambassador-- multi-lingual and personable--a friend between nations.
International cooperation is a must: already seven nations have partnered with CIRM--and, closer to home, several states as well--at the convention, Bob Klein and Governor Jim Doyle of Wisconsin signed one of the all-important documents of cooperation.
Here's how it works: by law, California money must be spent in the home state, contributing to jobs and the economy. But what if a scientist in another country or state wants to work together with a Golden State scientist? First, the Memorandum of Understanding (MOU) is signed. Then, if a project is approved, the work and costs can shared; the other state or nation pays their scientist, we pay ours--and two teams combine-- their strengths together for the same goal: more chance of success, more bang for the buck.
Irv Weissman, one of the greats of our field, spoke on the dangers of what has been called "stem cell tourism", visiting a country which may not have reliable medical standards: going deep in debt for something which may at best be useless, and which might well make things much worse. He pointed out the ISSCR's information source for anyone considering any sort of stem cell treatment.
Keynote speaker Fred "Rusty" Gage spoke about the hippocampus, a place in the brain which seems to break the rules: the central nervous system does not usually regenerate itself. But there appear to be new cells stored up in the hippocampus, which discovery may turn out to be singularly important. "Neuronal plasticity"--could the brain and spine repair itself?
Another member of Dr. Weissman's panel was Marius Wernig, a young and promising scientist. I once saw Marius wearing tennis shoes with a tuxedo--but tonight he was sartorially conservative. (I was a little disappointed; I liked the tennis shoes!) Wernig began his career as a world-class violinist and composer of orchestral concerts.
Owen Witte, once a student of Weissman's, took over the lab when Irv was overseas--during his absence, Witte hired a woman scientist- who became Dr. Weissman's wife!
Dr. Witte was currently working on a way to fight prostate cancer. I squirmed a little in my chair, remembering an undignified part of the male physical exam.
But disease strips away everyone's dignity, and cancer murders people every day.
Pier Giuseppi Pettici continued the assault on cancer, speaking on the need for an appropriate model to find out where and how the cells go wrong. Stem cells may help not only in transplantation, (replacing bad cells with good) but also by "modeling" a disease so its progress can be followed in a Petri dish instead of a patient.
Emanuelle Passeque addressed the process of aging as affected by DNA damage, how studying blood stem cells may reveal how ease conditions associated with oldness. As I become increasingly ancient (64 at last count), this becomes interesting.
One highlight: the convention (and the world!) was delighted that patients with injured eyes in Italy regained their sight, thanks to the use of adult stem cells. This is a wonderful victory for Dr. Grazziella Pellegrini, and the University of Modena.
They are doubly to be congratulated because they were working with one hand tied behind their backs. In Italy, it is against the law to fund embryonic stem cell research. So the scientists did what they could with what was allowed.
To give sight to someone who has been blind in one eye is wonderful indeed.
But to claim this success invalidates all other approaches would be wrong. Unfortunately, anti-research ideologues will try to use the Italian success with adult cells as an excuse to limit research freedoms, saying that it invalidated the need for embryonic stem cell research and therapies.
But is it ever a good idea to say there is only one good approach to science?
First, the "Modena method" only works on injured eyes, not those damaged by disease or genetic problems. This disqualifies the overwhelming majority of blindness sufferers. Second, only certain kinds of injury can be treated by this method. Everything depends on the patient having enough good tissue from the eye to draw cells from. It would be useless to a person born blind.
Finally, it must be noted that another scientist was unable to replicate Dr. Pellegrini's success. Dr. Ivan Schwab, an opthmalogy professor and stem cell researcher at UC Davis "...has treated patients in clinical trials with a procedure based on Pellegrini's work. While his patients improved for a time, the benefits didn't endure, he said."
--The Seattle Times, Rob Waters, June 19, 2010.
Adult stem cells have been studied (primarily bone marrow transplants) since the mid 1960's. This particular study began in 1998--coincidentally, the very year human embryonic stem cell research began.
Adult stem cell research is a useful tool, like a wrench or a screwdriver. But it is not the complete toolbox. Patient advocates, like the vast majority of scientists, support full stem cell research, not any single kind to the exclusion of all others.
I remembered Katherine Verfaille of Belgium...She had done excellent adult stem cell research in Michigan. Exaggerated claims were made for it, (not by her) calling adult stem cells the complete answer-- as a reason to ban embryonic stem cell research. But Dr. Verfaille is a scientist, and seeks the truth. She spoke out strongly, saying both types of stem cell research--adult and embryonic-- should go forward.
Today she is working with embryonic stem cells herself, trying for a cure for diabetes.
Her project was called: "Differentiation of human embryonic stem cells into pancreatic progenitor and insulin-positive cells."
If she succeeds? Annual diabetes costs in America alone are estimated at $200 billion...
it is the leading cause of adult blindness, and the amputation of limbs.
My daughter was taking part in the 30th annual "Escape from the Rock" swim. Googling it, I learned that a young man, Peter Finlayson, had dedicated his participation in the swim to fight hydrocephalus, a condition involving swelling of the brain. His sister suffered from the condition. He hoped to raise about $50,000, to fund a research effort.
I know nothing about hydrocephalus, and have never spoken with Mr. Finlayson. But he is doing what patient advocates do: struggling to fund research for cure.
The sea before me now seemed so empty, and vast. I remembered the old fisherman's prayer, "Lord, thy sea is so big and my boat is so small..." I also remembered the movie, "Escape from Alcatraz" with Clint Eastwood, based on a true story about a prisoner's attempt to get away. I like to think he made it to safety, but the odds against his survival were grim.
This part of the Bay is famous for its currents. When the ocean puts its power against you, it is just no contest.
The family next to me included a swimmer who had tried the event last year.
"You turn your head to take a breath--and a wave smashes you in the face," she said, explaining why she had had to accept a rescue.
The idea of swimming from Alcatraz seemed increasingly impossible.
Then again, the same could be said for stem cell research: attempting the impossible with the invisible, to cure the incurable...
I remember the first time I went to a spinal cord injury symposium, in Asilomar, California. I kept nodding off because the science was so complicated. Like Rex the "Far side" cartoon dog, who understood only one word of human, (his name) I could recognize about three words: spinal cord injury. I stood up so often in the question-and-answer period, the conference organizer took me aside, told me I had to shut up or leave.
Afterwards, I found a friendly scientist and told him: "I don't understand what you guys are talking about, but I know it is important--what do you need?"
He did not have to stop and think.
"Money," he said. "I can spend six months writing a grant, but if there are no funds-- everything stops."
Ever since, that has been the driving urge of my life, to get money for scientists, and to protect their rights to research freedom.
That means working with government, which has the power to help--or to hinder--biomedical research.
And the worst enemy along the way?
All too often, it is the scientists themselves.
Too many will not take part in the fight: neither to protect their funding, nor to keep their research freedoms. They say, "Ugh, politics!", as if that is an answer.
And here I must voice my one complaint about the ISSCR's magnificent convention.
There was no panel on patient advocacy.
This is an error, which should be rectified.
How can ISSCR scientists know about the tremendous battles going on for their rights and funding, if the people doing the fighting are not part of the conversation?
Too many researchers have no clue what is going on; they fill out the forms, and hope.
But what if there is no pool of money at the other end? What if there are laws (with jail terms) prohibiting the research? Scientists must understand what they are up against.
Every state has different laws governing the research; only a handful fund it at all. Does your state fund embryonic stem cell research? If so, it is one of the magnificent seven--forty three states do not. In some states you can be jailed for what is legal in California.
Some states are hanging in the balance: enormous untapped potential for research funding, against the threat of anti-research ideology.
For example, Texas. The Lone Star State has a $3 billion state-run cancer research program, begun by Lance Armstrong, the famous athlete and patient advocate.
Advocates like TAMR (Texans for the Advancement of Medical Research) fought long and hard to pass that bill--and to keep it from containing a "poison pill"-- a prohibition on embryonic stem cell research.
Dirty pool was played against the advocates, many with medical problems of their own. For example, at one hearing, local churches were allowed to bring children to testify about religious concerns on research--talking as long as they wanted--so patient advocate testimony was not heard until two in the morning, after the reporters were gone.
At a crucial point in the hearings, stem cell scientist Dr. Larry Goldstein of UC San Diego flew in to Texas to be heard beside the patient advocates. This is a champion scientist--no one can claim to be busier--but he took the time.
Together, scientists and advocates prevailed. The funding was approved, and presently contains no active prohibition on hescr. So, is the battle over?
No. The current governor (Rick Perry) is against it. And, frighteningly, the Texas Republican platform for 2010 contains a ban on any funding of embryonic stem cell research-- and a "personhood" clause which claims that life at fertilization is equal to a grown person - whereby the research could be considered murder...
A patient advocate panel at the ISSCR convention would have discussed not only what scientists can do to protect their funding--simple tips on legislative judo-- but they would also have discussed the threat of that "personhood" issue--to declare a blastocyst a legal human being--which would ban all embryonic stem cell research.
Anti-research forces in Colorado are trying again to pass a personhood law. In 2008, patient advocates were able to defeat it decisively. But this time Republican gubernatorial and senatorial candidates are in support, and appear to be using personhood to excite their political base.
Personhood bills are being proposed in numerous states; supporters claim as many as 40. I doubt that number, but it only takes one to shut down the research in that state--and perhaps lead to national legislation.
Speaking of national threats, the United States government is being sued, in an effort to shut down embryonic stem cell research: look it up, the case is Sherley vs. Sibelius. The case was thrown out once, but was appealed, and is alive again. (For a patient advocate's perspective of the lawsuit, go to my website, www.stemcellbattles.com)
Cure research scientists must be protected and paid-- paid well-- because consider the size of the problem they are up against.
Right now, we can keep chronically ill people alive for many years; but we cannot make them well. That means we have to keep paying their medical bills endlessly, going broke to maintain them in misery.
Last year, incurable (chronic) disease cost America $1.65 trillion--more than the national deficit for that same 12 months. No nation can afford this mountain of medical debt. The problem is gigantic; our response must be the same.
Biomedicine in general (and stem cell research in particular) must become huge, like the Defense industry, and for similar reasons: soldiers protect our lives, so do scientists and doctors. We all shared the horror of September 11, when 3,000 Americans were murdered. Chronic disease kills 4,000 people prematurely in 24 hours--9/11 every day-- incurable illness threatens the economic survival of our nation.
What can we hope for, when scientists and patient advocates do work together?
The California Institute for Regenerative Medicine is the best answer, of course. That was a patient advocate effort all the way, and the results have been spectacular.
To date, the CIRM has provided roughly $500 million for basic research, $200 million for construction of new stem cell laboratories,(AND matching grants of an additional $880 million from those institutions wanting California cash) and $300 million for translational research, to try and make therapies out of theories as quickly as is safely possible.
More than a billion dollars for research for cure, and more to come: wonderful indeed. Already, 400 scientific papers have been generated, pieces of the puzzle of cure.
Here is another example, less well-known.
My paralyzed son, Roman Reed, inspired a California law, the Roman Reed Spinal Cord Injury Research Act, which paid for Dr. Hans Keirstead's experiment to re-insulate damaged spinal nerves.
Keirstead's successful experiment led to the involvement of Thomas Okarma of Geron, a scientist/ businessman, one of the world's most determined CEOs; he let nothing stop him from moving the research forward. In the next few months, hopefully, ten newly paralyzed people will take part in the world's first human trials for embryonic stem cells.
Joseph Gold, also of Geron, spoke of using embryonic stem cells not only to fight spinal cord injury but also to fight Alzheimers, and to repair a damaged heart.
And now Geron was connecting with General Electric, the seventh-largest corporation in the world, so that stem cell therapies can become practical and available.
20-year veteran stem cell scientist Stephen Minger is leading that effort, through the Cell Technologies Research and Development department of GE Healthcare.
A patient advocate bill changed the world. What was unfunded science is now approaching mainstream cure.
That success should be the expected norm: patient advocates, government, scientists and corporations, routinely working together: united for the good of everyone.
Think of the power. There are only about four thousand scientist members in the ISSCR.
But in America alone, an estimated one hundred million people suffer chronic disease or disability. What politician could afford to ignore a constituency like that?
Four thousand scientists... one hundred million patients. Should we not work together?
Naturally, I found a microphone and spoke up about my concerns, and the new ISSCR President, Dr. Elaine Fuchs of Rockefeller University, was kind enough to suggest I write up my request and email it to her, which of course I did.
Next year, I hope, the ISSCR will have a full panel of patient advocates, not hidden in a corner somewhere, but smack dab in the general session, so every scientist can hear what they must know: if their research is be funded...
Some of my notes are almost incomprehensible, my hand writing being so bad. Someone (Mark Bonyhadi?) said: "The regenerative industry is developing before your eyes. What we do now becomes the standard, so we have to be careful; our watchword must be safety, safety, safety!"
Safety... On the beach before me was a large red "doorway" through which the swimmers would run, once they made it ashore. In the distance I could see kayaks, and policemen on jet-skis, herding the swimmers as best could be done.
One body was hurried ashore on an improvised liferaft--I held my breath-- but he sat up, he was fine, just exhausted.
I imagined my daughter out there struggling in the waves. Part of me wished I was out there swimming beside her. But the realistic half of my brain knew I would probably need her to rescue me, instead of the other way around.
Athletes were coming in now, big-muscled men and women. The first swimmer bounded ashore after only 28 minutes in the water. But there were empty waves behind him...
Come on, Babe, get home, I found myself muttering, wringing my fingers.
That urgent drive I felt right now, wanting my daughter to be safe, is what every parent feels, and what drives every scientist: to make a loved one be all right.
Another wave of swimmers came ashore; Desiree was not among them.
I began to play little games with my mind--that person is tall and slender--that could be her? But it was not. Not her, not her, not that one either--and then--
And there she was, tall and strong and slender, like a Naiad of the sea, her huge brown eyes alight with energy. I almost burst with pride and heard myself shouting her name:
"DESIREE, DESIREE REED, THAT'S HER, THAT'S MY DAUGHTER!"
And then we were driving home, chattering like magpies, about the sea lion which popped up beside her, and the tremendous force of currents she had to contend with--
And the scientists went back to their struggle.
P.S. Assembly Bill 1931, the renewal of the Roman Reed Spinal Cord Injury Research Act, just had its funding removed. If you would like to help protect that program's existence, come to my website, www.stemcellbattles.com, or join me on Twitter: my handle is diverdonreed.
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