12:20 AM.
Time to get moving. Plane leaves at six. Supposed to be there two hours
early.
Gloria is not coming with me.
Let's see. That means I have to find my way to the airplane parking lot-by
myself?
Gloria packed my clothes, so I will look neat and tidy-what else?
Hmm. I should bring my toothbrush, probably.
Anything else?
Books. Must have books.
The whole first day is travel, Fremont, California, to Phoenix, Arizona,
then to Atlanta, Georgia, and Athens, 90 miles from the airport.
Dr. Ann Kiessling is putting on a conference, "Barriers to Cure".
The idea is brilliant.
The goal is to end with a paper, listing what must be accomplished before
millions of paralyzed folks like my son Roman can have a chance to walk
again.
We need every disease and disability group to do the same: listing their
barriers to cure.
If we have a simple statement-clear and understandable!-we will find points
of agreement.
And when families of patients with Alzheimer's find common ground with
sufferers of cancer, and folks with spinal cord injury, or AIDS-then we will
be unstoppable.
As things are now, the various patient advocacy groups often seem alone in
the universe. When they work together, as sometimes happens thanks to the
Coalition for the Advancement of Medical research, then progress happens.
But all too often, we are.
Dis-unified.
Weak.
Safe to ignore, politically.
Contrast that with the furies of the Religious Right.
Those folks, whatever else they may be, definitely are effective: they know
how to terrify the legislators.
Yesterday, I was talking on the phone with someone from another state, one
where the religious right is dominant.
"They can organize enough votes to remove even a second or third-term
Congressman from office," said the voice on the telephone.
And so they rule.
Even though, as my friend John Hlinko puts it, "We outnumber the opposition
two or three to one", they win way too many battles.
I had asked John (one of the key people in the effort to draft General
Wesley Clark for the 2004 Presidential election, and a prime organizer for
STEMPac) for his best tip:
If he had a room full of potential patient advocates in front of him, what
would he say?
"This is not a pillow fight." he said, "We need to activate, not just
educate.
"(The opposition is) smart, experienced, and passionate. They know how to
fight hard, and if we want to beat them, we need to fight back hard as well.
"Many good hearted people on our side believe that if we just educate (about
stem cells), that we will surely win the day. But here's the inconvenient,
uncomfortable truth -- that's wrong. We've already got 70% of the
population on our side, and yet, the other 30% are kicking our butts. We
need to do what the other side does -- . start focusing on activating our
side effectively. Specifically, we need elected officials to believe that
they will lose their jobs if they oppose us. Right now, they do not. They
fear the opponents far more than us, and until we change that, we'll be
stuck on defense."
Now, I would disagree that we are losing. I think we are winning-just far
too slowly.
It should not even be a contest.
To cure people, or not? This is a decision?
If we support massive funding for the NIH, and full stem cell research
across the board-adult, embryonic, SCNT and iPS, but none at the exclusion
of the others-we will win.
If we let cure be marginalized, we lose.
Yesterday, my wife Gloria said, "Come on, we're going to the movies."
The film was called UNDER THE SAME MOON.
An instant classic, you must see it. It has no advertising, seek it out,
please.
A nine year old boy tries to re-unite with his mother, who has been working
as an "illegal" across the border-they have not seen each other for four
years, since the boy was five.
But every Saturday at nine o'clock, she calls him on the phone.
She always tells him about the place where she is calling from, describing
it, so he can see it in his mind, and feel closer to her.
"It's a Laundromat, and a mural," she says, "and a Domino's pizza side by
side," he chimes in happily because it is a little game they play, until the
pay phone cuts them off.
One day, his grandmother dies.
And the boy sets out to find his mom.
Along the way, he travels with a man who does not want to help him.
But gradually, the man alone learns to work together with the boy.
Both are at constant risk of deportation.
They sleep on a park bench one night, having made it to Los Angeles.
The man wakes up first, and does not want to disturb the sleeping child.
He hurries off to buy food.
The police arrive.
They wake up the boy, ask him who he is with.
He sees the man coming back, with a little bag of McDonald's, and two
styrofoam cups of orange juice.
"Are you with him?", the policeman asks.
The boy shakes his head. The man turns his head away.
The police take the struggling boy to the patrol car, open the door, shove
him inside-and the man throws the food at the cops, charges them.
Oh, no, I thought, they'll shoot him.
But they don't. They wrestle him down, handcuff him-and he yells to the kid,
run, run!
The boy does.
He gets away.
The man, we do not see again. Presumably he is deported, or jailed.
But the boy finds his mother.
Courage, self-sacrifice, unity: acting together, the man and boy became
unstoppable.
As we must be.
Tomorrow, I will listen to wiser folk than me: which is practically
everyone, but in this case it is twelve top scientists.
I will be typing frantically on a laptop computer, the gift of Beth Drain,
struggling to understand what the scientists say, identifying the barriers
to cure.
Some obstacles are scientific. Do we need to dissolve the scar in the
injured spinal cord, or bore through it, or go around-- so the
brain/spine/body can communicate?
That is for the scientists to figure out, and for me to try to understand,
at least a little.
But the single greatest barrier is something each of us must deal with:
The error of thinking ourselves alone.
We are many, and must act as such.
Don C. Reed
Sponsor, Roman Reed Spinal Cord Injury Research Act
Founder and Co-Chair, Californians for Cures
Vice President of Public Policy, Americans for Cures Foundation
"People Powered Advocacy for Stem Cell Research"
Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
rbrown@xxxxxxxxx
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