Before we begin today's article, a special reminder:

Thursday, November 20th, Sacramento.
The Capitol building, fourth floor.
Room 4203. Nine o'clock in the morning.

Just a few days from now, there will be a meeting about the California stem 
cell research program, and if it should be changed.

It is the Little Hoover Committee meeting, and they will be studying the 
structure of the Independent Citizens Oversight Committee ( ICOC ), board of 
the California stem cell program, the single largest stem cell research 
funding program in the world.

Right now, I feel the California program is our program, because it is run 
by patient advocates like you and me, plus educators, scientists, doctors, 
biomed leaders and other experts: these are the leadership people 
(Independent Citizens Oversight Committee, or ICOC ) everyone deeply 
involved in the struggle, and committed to that fight.

To replace or weaken that board of experts-substituting some 
as-yet-undisclosed mix of politicians and critics-would be a disaster.

If you can, attend that meeting. Take a day off from work, and come. (for 
the full agenda and information, go to: 
http://www.lhc.ca.gov/lhcdir/cirm.html

If you want a reminder why it matters, read the following:


DEATH SENTENCE BY DISEASE-and How We Must Fight Back

by Don C. Reed

"Amyotrophic Lateral Sclerosis (ALS . Lou Gehrig's Disease) is a 
progressive, usually fatal.disease caused by the degeneration of motor 
neurons, the nerve cells. that control voluntary muscle movement. . The 
disorder causes muscle weakness and atrophy throughout the body as 
the.neurons degenerate, ceasing to send messages to muscles. Unable to 
function, the muscles gradually weaken, develop fasciculations (twitches) 
because of denervation, and eventually atrophy.... The patient may 
ultimately lose the ability to initiate and control all voluntary movement 
except for the eyes."

--Wikipedia.


Last Thursday Gloria and I attended a meeting about one of the deadliest 
medical conditions on earth: ALS , Lou Gehrig's disease.

Held in the beautiful Intercontinental Hotel of San Francisco, the evening 
was a lecture/fundraiser on behalf of the Greater Bay Area ALS Association.

We were guests of Diane Winokur, a champion of research advocacy.

I spotted her immediately: small, elegant, full of energy, an exclamation 
point of a person.

"Ahh, Don Reed, the advocate I got arrested!" she said, by way of 
introduction.

She was referring to a trip we had taken together, to testify at a hearing 
about Senate Bill 1565. I was going to give her a lift to Sacramento , and 
found her hotel without difficulty. But San Francisco is a maze of one-way 
streets, and as we drove off, there was a small legal question about how to 
negotiate a narrow unmarked opening onto the road.

"Oh, you can turn here, no problem," Diane had said.

I made the turn. Instantly a siren started up behind us, wailing that 
particular, "yes, that means you, pull over," kind of noise.  Apparently, 
the San Francisco police did not share her views on traffic directions. I 
was not actually arrested, but it was a near thing.

We smiled, remembering, and then she went back to her duties, making people 
glad they had come tonight-to help in the fight.

Diane's youngest son, Douglas, died of ALS in 1997. Her oldest son, Hugh, 
was diagnosed with it in 2005.

Each year, five thousand Americans are diagnosed with ALS . For most, it is 
a death sentence. Ninety per cent die within five years.

My friends John and Genevieve Ames were there. John is involved in a major 
program to educate pharmacists about the life sciences; Jenny is a scientist 
herself, if I understand correctly, in the field of medical anthropology.

And I had not seen them since their son David passed away with ALS .

Exemplary parents, they had fought for David's life with everything they 
had, even taking him to South America , trying anything that had a chance of 
helping.

But at the last, he said goodbye.

What can you say?

 I went up and hugged John, like I would any friend who has stood beside you 
in battle-John was out there on the streets with us, collecting signatures 
for Proposition 71-I felt so helpless.

But there they were, still in the fight, carrying on, honoring the memory of 
their son.

The person we were there to hear was Dr. Lucie Bruijn, Senior Vice President 
for Research and Development for the ALS Association.

"The last few months have been an exciting time for ALS research," she said.
"Researchers are generating new model systems for ALS . the first stem cells 
were generated from ALS patients, new clinical trials are underway.

"With all this excitement, the question remains: why are there still no 
meaningful therapies for ALS ?

" ALS is a complex disorder. No two patients manifest the disease in exactly 
the same way. There are likely to be many different causes for the 
disease .an individual's  (genetic) predisposition in combination with 
environmental exposures."

That made sense. Cancer is caused by both a person's genes and the 
environment. Some people can smoke cigarettes all their lives, no problem. 
Others get the cancer; their genes are different-a mix of environmental 
causes and genetic makeup.

When she described an enemy which seemed to be ever-changing, I thought 
about AIDS.

When she spoke about rescuing damaged nerves from paralysis, of course I 
thought about my son, Roman, who has a spinal cord injury.

She spoke about how Big Pharma needs to be educated about the connections 
between diseases. The giant drug companies are not likely to spend several 
hundred million dollars developing a drug which will only be bought by a few 
customers.

But neurological conditions (if taken together) affect millions. That vast 
pool of affected families makes it economically viable for the big drug 
companies to invest their money in cure. (Flash! Did you hear that Pfizer 
will be devoting $100 million to stem cell research over the next several 
years? That's important!)

She credited the work of Dr. Clive Svendsen, and pointed out an excellent 
article, "Stem Cells and ALS : Where are we now?" which he had written for 
the ALS Association.

That article spoke of working with adult stem cells from bone marrow, 
embryonic stem cells for making motor neurons, and potentially, the induced 
pluripotent stem cells as well: a full stem cell approach.

"Stem cells may be able to help in the battle against ALS .: from cell 
therapy to disease modeling, drug delivery and drug screening."-Clive 
Svendsen, Ph.D.

But as always the biggest impact was personal.

For as she talked, there were two people sitting in front of us. They had 
driven up from Fresno to attend this meeting.

They were a genuinely handsome couple: the husband was a big solid football 
player kind of guy, someone you would want beside you in a fight.

His wife had beautiful blue eyes: remember Jean Simmons in the movie 
Spartacus? Eyes like that, stunning.

But in those eyes was fear.

Just six months ago, she had been diagnosed with ALS . Already, the disease 
had progressed, so she now needed a three-pronged metal cane for balance 
when she walked.

We talked, and they answered my questions politely.

I said the best words I could think of:

Please know you are not alone. We are in this together. My son has 
paralysis, my sister has cancer-a hundred million Americans have an 
incurable disease or disability-and if our families stick together, there is 
no stopping us.

I told about Roman and Christopher Reeve and the paralyzed rat that walked 
again, and that we would prevail-all the things you know I would say-- but 
even as the words came out, they seemed hollow, no comfort.

Because when I walked away, she would still have ALS .

Her husband's attitude was fiercely protective, he would go through fire for 
her.

But this is a fight only the scientists can win.

".scientists are committed to finding the answers, and new insights are 
continually unfolding. There is increased interest from the industry sector, 
critical for the development of therapies. There is also increased awareness 
of the disease through media opportunities, advocacy efforts and the 
dedicated ALS community. For all these reasons and the increasing number of 
collaborative efforts, I am confident that we are going to move forward in 
ALS research to find the meaningful therapies so desperately needed in this 
disease.-said Lucie Bruijn, Ph.D

Overall impression: through every word she spoke, came an attitude of 
determination. Physically skinny, built like a long distance runner, she 
made me feel she was in the fight for the long haul: that she would never 
allow discouragement to stop her; that she would just keep on, no matter 
what-a definite heavyweight in the field.

We clapped enthusiastically, and then came the question and comment period. 
I had one of each, and as usual, I was first in line for the mike, in case 
there was limited time.

My question was: what did the speaker think about the importance of 
President-Elect Obama's pledge to double the NIH funding, which (under the 
current administration) has been flat-lined for the past five years. 
Naturally, Dr. Bruijn supported the increase, and gave expert advice on ways 
the money could be spent most effectively.

My comment was a reminder.

Thursday, November 20th, Sacramento.
The Capitol building, fourth floor.
Room 4203. Nine o'clock in the morning.

Just a few days from now, there will be a meeting about the California stem 
cell research program, and if it should be changed.

It is the Little Hoover Committee meeting, and they will be studying the 
structure of the Independent Citizens Oversight Committee ( ICOC ), board of 
the California stem cell program, the single largest stem cell research 
funding program in the world.

Right now, I feel the California program is our program, because it is run 
by patient advocates like you and me, plus educators, scientists, doctors, 
biomed leaders and other experts: these are the leadership people 
(Independent Citizens Oversight Committee, or ICOC ) everyone deeply 
involved in the struggle, and committed to that fight.

To replace or weaken that board of experts-substituting some 
as-yet-undisclosed mix of politicians and critics-would be a disaster.

If you can, attend that meeting. Take a day off from work, and come.

You don't have to make a speech; but you can if you want, public comment is 
allowed.

If you do want to talk, nothing fancy is required. You might want to say 
something like: The California stem cell program is magnificent; and it is 
the will of the people of our state. We voted for it, exactly as it is. Don't 
mess with a good thing.


P.S. In small ways as well as large, we must support each other. For 
example, I don't have the kind of wallet that can support a serious 
donation.  But after that meeting, I just  had to do something, so I found 
the website, www.alsabayarea.org, and clicked the donate button, gave $25. 
This is nothing to brag about-- but if three thousand people reading this 
column chipped in $25 apiece, that is $75,000, which might fund a researcher 
for a year. Who knows what that one researcher could find?

He or she might provide the missing piece of the puzzle, and save the life 
of somebody's loved one-and help to end to one of the cruellest diseases on 
earth.



Don C. Reed
Sponsor, Roman Reed Spinal Cord Injury Research Act
Founder and Co-Chair, Californians for Cures

Don Reed is also Vice President of Public Policy for Americans for Cures 
Foundation; opinions voiced here as an individual may or may not reflect 
those of the Foundation.




Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
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