CANADIAN  DELIGHTS—a Patient Advocate’s Perspective on the 9th Annual International Society of Stem Cell Research Conference

By Don C. Reed

“You’ve got to see Niagara Falls while you’re here,” said my flight mate, “It is gorgeous from the Canadian side.”

“I couldn’t without my wife Gloria,” I said, “It is on our must-do-together list—plus I will be too busy at the stem cell conference!”

“Stem cells? We’re going there too!”

It seemed like half the plane turned around: patient advocates and scientists, and everyone excited.

The sparkling clean city of Toronto, lovely mix of old and new, made us welcome. If you have ever been to Boston, with its blend of carefully preserved past and shining modernity, you would feel at home.

Canada’s magnificent newspaper, THE GLOBE AND MAIL, did an in-depth coverage of the International Society for Stem Cell Research
convention, including a full story on the opening of a website* about stem cell research.

Why? In the arena of international stem cell research, the country of the Maple Leaf is a major player. Canada understands. Maybe the rest
of the world was consumed with Stanley Cup hockey fever, but the Premiere of Ontario, Dalton McGuinty, was attending a press conference on regenerative medicine.

Of course, he had to acknowledge the game:

“Tonight we will see if Canada’s Canadian hockey players—are better than America’s Canadian hockey players,” said the Premiere at the press conference for the new website,

Stem Cell City, the electronic presence of the McEwen Center for Regenerative Medicine. (

I was in the audience, one of the lucky patient advocates who had their way paid to the convention.  Not only did we get free admission (not cheap!) but the California Institute for Regenerative Medicine (CIRM) flew us up and even helped with the hotel bill!
Check out the CIRM website,, and follow the action.

Premiere McGuinty spoke of Canada’s pioneering giants, James Edgar Till
and Earnest Armstrong McCulloch, first to prove the existence of stem cells. In
2001, Canada’s Stem Cell Network began, which has since trained over 1,300 new
stem cell scientists.   In 2007, California Governor Arnold Schwarzenegger, Bob
Klein of CIRM, and Premiere McGuinty met to create the international Cancer Stem
Cell Consortium. And in 2011, Dr. Mick Bhatia of McMaster University converted
skin cells directly into blood cells… Think what that miracle could mean, to the
always short supply of usable blood.

The ultimate patient advocate, Bob
Klein, author of Prop 71, received the first-ever ISSCR Public Service Award.
He took the opportunity to thank Canadian researchers for developing insulin–
which keeps his diabetic son Jordan alive.

The entire convention was like
that, surprises built on the hard work of researchers.

It was also (for me at least) a struggle to understand what the scientists were saying.

The purpose of the event was for scientists to share information
with each other and encourage the research of the world, so they talked pure
“science-talk” all the way, giant latin words, which is right and proper when
they chat among themselves.  Like auto-mechanics, they are masters of a world
the rest of us may never know.

I am no scientist, just an educated supporter, so everything I say here should be taken with a grain of salt.

My favorite presenter?  Shosei Yoshida of Japan, who spoke on the topic
of “Sperm Stem Cells in Mouse Testis”. This was not a subject to which I had
previously given much thought, and probably won’t in the future.

But if we had an impersonator, someone like Rich Little who could imitate movie stars,
Shosei Yoshida would be someone worth watching.  He was so happy and animated,
full of the joy of helping, as if he had won the lottery and was giving the
money to the world.

But a question dogged my mind. Why was this important?

And when another presenter, Johns Hopkins’ own Daniella
Drummond-Burbosa, spoke on: “Control of stem cells by diet and systemic factors
in the drosophila ovary”, I turned to the scientist beside me, and asked:

“Why does this matter? I mean—houseflies?”.

“For reprogramming cells,” she said, “A fly’s insides are easier to understand. If we go back to
the beginning stages of living tissue,” she said, “we can figure out how each step works.”

The whole conference was like that:  information overload,
confusion of new knowledge, and here and there a glimmer of understanding,
something shining and extraordinary.

As you know, my son Roman has been paralyzed seventeen years, and I hate paralysis with all my might. I wish it was
a person I could physically attack.

So imagine making a hollow spinal
cord column—and stuffing it with stem cells?
Robert S. Langer, MIT professor
with more than 1,100 published articles, and with approximately 760 issued and
pending patents, spoke of working with top embryonic stem cell scientists to do
just that.

It sounded impossible, but there it was on the screen before
us, and monkeys which had been paraplegic were galloping on a treadmill. There
were gasps in the audience.

Greatness of the future? Robert Blelloch
received the ISSCR Outstanding Young Investigator Award for his work on the
signals regulating both embryonic and induced Pluripotent stem cells.

A room full of junior researchers heard successful scientists talk about how to
get grants. Naturally I had to chime in about  the California stem cell program,
how every new scientist should make the CIRM website their homepage, so they
could find out what new grants were coming.

It irritated me that the California stem cell program was not systematically represented throughout the
program—but when I griped about it to someone from CIRM,  he pointed out that
the program was made by the ISSCR, and neither Canada nor California could
dictate to it. And, with the CIRM chair receiving the first ever ISSCR Public
Service Award, and a young investigator award going to a CIRM grantee (who
credited CIRM for his success), the agency was hardly invisible. (Also, CIRM
communications director Don Gibbons put on a public outreach program I did not
know about until later.)

In the elevator, naturally I was talking stem cells to everyone I met. You can say a lot between floors.

“Here for the stem cells?” I asked one distinguished-looking early-riser. He said yes, and we
shook hands.

“I’m Rudy Jaenisch,” he said.

“Whoa!”, I said, and jumped back a little—then I shook his hand again and thanked him for doing so
much to help the field. He was speaking on “Stem Cells, Pluripotency and Nuclear

At the ‘MEET  THE EXPERTS LUNCH” you could sit with a
favorite scientist and eat a good basic box lunch and ask anything you wanted. I
got to sit with Margaret Goodell of Baylor College of Texas, and what a charming
person she was. In addition to being an expert on hematopoietic stem cells, she
was one of those people one has no choice but to like—so glad she is in our

Irv Weissman  spoke of the dangers of “stem cell tourism”, where
patients went overseas and tried potentially unsafe procedures, spending their
life savings on something which might not help at all, and which might endanger
their lives.

Shinya Yamanaka! The famous Japanese scientist who came up
with induced Pluripotent Stem cells (iPS) (which may one day replace embryonic
stem cells, although I personally am unsure about that). He was ready to answer
several scientific articles, which had been critical of his new

Everything boiled down to the comparison between embryonic to
iPS, and he talked about it for 26 minutes, give or take a paragraph. I wanted
to understand.

Having thoughtfully located a seat next to the microphone,
I was ready for the announcer to ask for questions. I also knew everybody in the
room would want to ask them as well. Halfway through the magic word “Question”,
I bounced up as from a trampoline, and was talking before the echo of the word.

“As a patient advocate, I want to understand—did you say there was a
difference in the—immunogenicity (I struggled with the word) —of iPS compared to

And he said—something. I thanked him politely, and sat down
to think about what I thought I heard.

If I understood his remarks
correctly, he said there were differences, but they might be good ones as well
as “bad”.  An earlier slide had shown overlap between the two kinds of stem cell
research. Many embryonic stem cells are like many  iPS cells, he said, and vice
versa. A good difference was that the immune response might be less because the
cells were made from the patient’s own body. Also, cells of all kinds may

More research needs to be done, he said, comparing and

The man is honest. He defends his research, which is right and
proper, citing the studies that appeared to shine negatively on

And he made everyone feel proud of Japan, which is hosting the
ISSCR meeting next year, despite the disaster which so riveted the

“It is safe, it is beautiful– and you will like the food!” he
said, and the audience burst into applause.

There were endless choices to be made. Multiple “tracks” made possible an organized presentation of
various approaches.

Freda Miller: fighting paralysis with skin cells,
which may be turned someday into useful nerves.

Elly Tanaka: how a
salamander regenerates its severed spinal cord by first growing a living “tube”
for the cord to grow inside.

Amy Wagers of Harvard spoke about
regenerating muscle function for the aged—wow, that made me sit up and take
notice! I had always heard critics of the research say we were all hunting for
some fantasy fountain of youth, and this made no pretentions of being that—but
to my aged and aching muscles, it sounded very good indeed.

And speaking
of Harvard, Brock Reeve walked by.  Naturally I had to jump up and run over and
shake the hand of the director of Harvard’s stem cell program, and brother of
Christopher Reeve.

It felt like a Hall of Fame for research for

Fred Gage of Salk, Sally Temple of the New York Neural Stem Cell
Institute, Elaine Fuchs, chair of the ISSCR itself—each one of them deserving of
a book or two about their research–and the exhibit halls? Huge. I could have
spent a week in there, and never come to the end.Two phone book-sized volumes
gave brief descriptions of the thousands of posters.

I walked up to two
Chinese scientists, and asked them where the most stem cell research was in
China, and they said: “Beijing, Shanghai, and Guangdong”—we chatted a bit. I
tried out my baby-talk Mandarin on them, and they were polite enough to pretend
I was understandable—and it turned out one of them, Gang Li, was now in Mountain
View, California, and we had a mutual friend, Deepak Srivastava, who recently
published an article on turning heart scars into useful tissue, which may be of
enormous significance.

Hans Keirstead! The Canadian/California scientist
was his usual cheerful self, there for   another piece of groundbreaking
research. He, Tanya Watt and Gabriel Nistor were presenting work on: “Does human
motor neuron stem cell-derived neurotrophic support enhance the development of
the NMJ in Spinal Muscular Atrophy”—a stem cell therapy aimed at saving the
lives of children who may otherwise die before the age of two.

And over
there was Bernie Siegel of Genetics Policy Institute. He and Alan Fernandez are
working their heads off getting the World Stem Cell Summit together, and I
really did not think they would have the time to attend the ISSCR, but there
they were, maybe a little exhausted, but spreading the word and advancing the
field like they always do.

Don’t forget,  the World Stem Cell Summit will
be in Pasadena, California, this year, October 3-5—a must see for every patient
advocate! (If finances are a barrier, check with both Bernie Siegel of the
Summit, who has reduced rates for advocates—and also check out the CIRM website,
because they may help pay the way for some advocates!) The World Stem Cell
Summit is very different from the ISSCR conference, being designed to bring
together not only scientists and biomedical entrepreneurs, but above all the
advocates, the emotional muscle behind regenerative medicine.

the GPI booth was Aaron Levine of Georgia Tech, expert on stem cell battles in
the states—great to say hello to friends you have only met on the email

Lorraine Stiehl, patient advocate coordinator for the CIRM, told
me that Meri Firpo was going to be there.  Dr. Firpo has been working so hard to
keep Minnesota’s research freedoms alive. I had brought my stem cell phone book
along (I thought) and I wanted to sit down with her and see if we knew the same
people—but I brought the wrong phone book! Argh…

George Daley of
Boston’s Children’s Hospital, great scientist and communicator… he could be a
convention by himself! I tried to sit at his table during a meet the scientist
lunch, but the scheduler laughed—Daley’s  table was booked solid before the
conference began.

One huge overall impression? Despite all the talk about
new methods, embryonic stem cell research is increasingly the number one
research choice. I walked up and down the research poster aisles every day for
at least a couple hours, and it was astonishing to see how even in countries and
states officially against the research, there were people who were studying it

And the two biggest names in non-embryonic stem cell research?
The world is abuzz with the iPS work of Shinya Yamanaka, just as it was with
adult stem cell research of Catherine Verfaille when it seemed she might have a
method which was just as good as embryonic—both of them had experiments underway
in embryonic stem cell research.

The hall of biomedicine in action was a
continual surprise—every time I walked down an aisle, there was something else
to explore, new and exciting.

Like Kowasaki, the famous Japanese
motorcycle company, now heavily into biomedicine.

Or Xyclone, with their
laser, which may help Somatic Cell Nuclear Transfer (SCNT, sometimes called
therapeutic cloning) become a practical reality.  So far, SCNT has endured
tsunamis of political attacks, but even when it was allowed, success seemed far
away. SCNT involves removing the nucleus of a woman’s egg, and putting a bit of
skin inside. Set in a dish of salt water, shock with electricity, wait 5 days and take it apart for stem cells. But—every time the needle goes into the egg, seems like it automatically collapses.  If one person’s cell lines takes several hundred eggs, it will never be practical. Human eggs are scarce and precious. So SCNT (though I support it) may never work.

Unless a way could be found to make an ultra-small hole in the egg—and that may be what the Xyclone laser can do.

Conversations and companies, theories and therapies, champions of the past and future.

Thank you, ISSCR for bringing together the greatest stem cell researchers in the world.

Thank you, CIRM, for making it possible for patient advocates to take a look into the future.

And thank you, Canada, stem cell champion, and our beloved neighbor to the North.

* “New website rallies stem cell advocates”, Carolyn Abraham, The Globe and Mail, June
16, 2011 (for more information, please visit: .

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