THIS CAME FROM DON C. REED VIA DIANE WHEN I WAS THINKING ABOUT PEOPLE WITH
SPINAL CORD PARALYSIS, ALS, AND  HUNTINGTON'S NOT HAVING TIME TO SPARE AND
WAIT WHILE FOLKS ARGUE.  RAY
 265 Monday, December 11, 2006  -  OF CURES, AND CHORES
What do you do when everybody in the room is smarter than you-and they all
think you're wrong?
That has been pretty much the story of my life, ever since the nightmare
began, September 10th, 1994, when Roman was injured on the football field,
The doctors: "Your son will never walk again, never close his fingers,
almost certainly never father a child."
The Church: "Not only will we not do a fundraiser for Roman's therapy costs,
but you should know you are going against God's will for your son."
Organizer of spinal cord injury science conference: "This is a meeting for
scientists to share information among themselves: if you keep asking
questions, we're going to have to ask you to leave." (I did shut up, for a
while. But at that same Asilomar conference, I asked a scientist what was
her greatest need to advance the science? She answered in one word: money.)
Conservative: "These people (paralyzed) did it to themselves, let them get
themselves out of it." (He opposed spending tax bucks on research for cure.)
Liberal: "This research (SCNT) will require millions of human eggs, and for
no guaranteed benefit."
For one of my columns supporting human embryonic stem cell research, "very
bizarre. I don't know who Don Reed is." (this from a government official.)
For a column supporting a scientist who believes in adult stem cell
research: "You are. hero-worshipping."
On my too-frequent comments at ICOC meetings: "You are making a fool out of
yourself".
From the woman who spat on me while I gathered signatures for Prop 71:
"Hock-ptoooie!"
Fortunately, being something of a blunt instrument, I am equipped to handle
criticism, especially when the other person is a horse's BLEEPCENSORED.
But when you really respect someone.?
I had the good fortune to attend the grant review meeting for this year's
Roman Reed Spinal Cord Injury Research Act money.
Now, the amounts in question are nothing like the California Institute for
Regeneration. They are dealing with millions, we are talking thousands.
We have a total budget of $1.5 million a year. Next year, we will fight for
more.
But on this day the fight was over a very small pile of money.
An average RR grant is only about $80,000.
Even so, it matters.
Because who knows which experiment will be the one that turns the key,
opening the door to cure?
And every once in a while, we strike gold.
Like the Hans Keirstead experiments with human embryonic stem cells, which
go to human trials next year.
There were thirty grant requests. We could fund perhaps ten. But which ones?
Several patient advocates are on the board. We could sit in, and listen and
participate, but not vote.
Around the table were nine scientists with long histories of spinal cord
injury research for cure:
They were: Dr. Henry Teitelbaum, Dr. Harry Goshgarian, Dr. John D. Houle,
Dr. Robert J. McKeon, Dr. Philip G. Popovich, Dr. Jerry Silver, Dr. Jonathan
S. Carp, and Dr. George M. Smith.
These are men to respect.
They knew they were in the presence of lay folk, myself, Karen Miner, Fran
Lopes, and Susan Rotchy, and at first they made an effort to talk people
talk for our benefit. But gradually they relaxed and chatted as scientists
do, the intellectual shorthand common to every specialty.
Like conversational Latin: nice if you speak it, but if you don't..
Like my Dad, Dr. Charles Reed is 85 now, and his hair is still jet black,
while his son's is mostly white. My wife's family was discussing this hair
coloration phenomenon-in Spanish-but they did not know my Dad is linguist
who can communicate in seventeen languages... He answered them (in Spanish)
that yes, he did indeed tint his hair.
So there we were, Karen and Susan and Fran and myself, struggling to
understand the scientists.
The decision would be based on a score: from one to four points, with one
being wonderful, and four being no chance.
Two reviewers had studied the proposal, gave it a grade, and discussed their
reasons for the score, after which the other scientists would agree or not.
One person I did not have to worry about, I was sure, was Dr. Keirstead. His
earlier work  had been overwhelmingly successful (which pride compels me to
mention was initially funded by the RR Act) including the famous rats that
walked again after human embryonic stem cells, which was going to human
trials next year, the first clinical trials..
Now he was trying another experiment, based on work done by Dr. Doug Kerr of
Johns Hopkins, but with a different "vector" (way to deliver the improvement
factor) and with ultra-pure embryonic stem cells.
I figured there would no problem there. Not to approve Hans Keirstead?
Other proposals came first. Among them: a request for more funding for a
wonderful advancement on the Petri dish, designing it for stem cell
research; several proposals for assisted therapy like treadmills; one
wonderful and purely practical attempt to locate and test drugs already on
the market for other purposes; one to try and set up a brain-computer
interface; studies of nerve growth and how it might be influenced
chemically; a really interesting idea of using salmon as a matrix (the gel
in which stem cells grow);
--and all the while I was waiting for Hans Keirstead's project, titled:
Human Embryonic Stem Cell-derived Motor Neurons for the Treatment of Chronic
Spinal Injury.
"CHRONIC"..that is huge-that's everybody who has been injured with a spinal
cord injury for more than a few days.
The reviewing scientists presented their evaluation of the various projects,
saying this one was outstanding, plenty of prior research backing up the
idea, but that one was too ambitious, and the other was questionable - not
enough data given.
One of the reviewers said of a project, that rejection was no big deal, they
could just come back next year and try again.
And Karen cleared her throat and said: "For some, there is no next year."
That brought us back to grim reality: research is not theoretical
discussion.
Debate was.vigorous. Some of the scientists whose work was being discussed,
would not have enjoyed what was said, which was why they were not there.
Sometimes, scores were changed, up or down, but usually not. These were top
people, with long years in the lab.
Mostly, I agreed with the scientists' reviews. I did like the idea of a
flexible exo-skeleton which would provide support for a paralyzed person
learning to walk again, but the reviewers felt there were too many
complications.
But I understood only one in three projects could be funded, which meant
some very good research would not go forward.
And then at last it came, the one I was not worried about.
Hans Keirstead's work, the only hESC project, to make the big motor nerves
that run the length of our arms and legs, for chronically paralyzed
people-this is probably his most important work ever.
I was so proud the Roman Reed Act was going to be the first to fund it.
But when the reviewers' scores were read, I could not believe what I was
hearing.
The scores were: 2.3 and 2.6, too low to be funded.
What? Did my ears deceive me?
He is trying something too difficult, it was explained.
The money should go to someone with a more accomplishable goal.
I looked at Karen, just out of the hospital, pale, too thin, but here
nonetheless.
She frowned, and shook her head.
And the fight began.
For forty-five minutes, we argued.
I have never felt such a weight of responsibility: that I must be at my
best, and fight successfully. It was no good to make a noble effort and
fail. We had to win. Even if I lost the friendship of every person in the
room, that research had to go forward.
I talked, and talked, and talked. I shouted, whispered, pleaded. My ears
rung, I was sick of the sound of my own voice, which seemed to echo in my
head.
But at the end, a scientist said: "This is not the NIH. This is the Roman
Reed Act. Maybe it is a good thing, we take a risk."
The score  was changed-- to 2.0.
The Keirstead research will be funded.
So what is the point?
We dare not leave the fate of stem cell research to somebody else.  There is
no somebody else, just us.
In the next two years, there will be battles too huge to lose. We cannot
wait until 2008 and hope for a more supportive President, and some more
anti-research legislators to be defeated.
Here we stand, here we fight.
HR 810, the Stem Cell Research Act, is right around the corner, just a
couple weeks ahead. That is a must-win situation.
Tell your friends; remind the neighbors.
If we want the cures, we must be there for the chores.
By Don C. Reed, Chair, Californians for Cures, www.stemcellbattles.com.

Email Don at: [log in to unmask]



TIME's Person of the Year is the person or persons who most affected
the news and our lives, for good or for ill, and embodied what was
important about the year.

Let them know how important a Democratic Congress and Speaker Pelosi is
- as the First Woman Speaker in the history of the U.S.!

Show your support of California's own Nancy Pelosi and cast your vote
today. (http://www.time.com/time/personoftheyear/2006/walkup)




An invitation to join my new Yahoo Group, the Daily Kos Stem Cell Supporters
Group.
http://groups.yahoo.com/group/DailyKosStemCells/
Please send this around to folks who support stem cell research, i.e.,
friends, neighbors, loved ones, bloggers, activists, and almost everyone you
can think of.
Thanks!
Miriam, Member, Democracy for NYC

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