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Archive for May, 2011

DELAYED BUT NOT DEFEATED:  Paralysis Research Bill Shot Down in Committee

By Don C. Reed

California’s AB 190 (Wieckowski, D-Fremont) has been—at least temporarily—killed in committee. 

The bill would have provided funding for the Roman Reed Spinal Cord Injury Research Act. It was denied (without even a public vote) by Appropriations Chairman Felipe Fuentes (D-39).   Apparently, Chairman Fuentes had a philosophical disagreement with the funding mechanism of the bill, a small ($3) penalty add-on to traffic fines. This penalty seemed logical, car crash being a major cause of spinal cord injury.

It only took about ten seconds to shoot down the hopes and dreams of millions of paralysis sufferers.

“AB 190, Wieckowski, would increase traffic fines to fund spinal cord injury research.  Hold in committee.”

Translation: the bill is stopped, at least for now.

 Who won?

  1. The anti-research arm of the Religious Right. Because we are in favor of stem cell research, (though we have not funded any since 2008) the Family Research Council (FRC) with its ten million dollar annual budget listed our small bill as one to destroy. They won.

2. The American Automobile Association (triple A) opposed the bill because it fined bad drivers. They won.

3. Bad drivers emerged victorious; their traffic violation fines will not be increased. They won.

Who lost?  

  1. Five and a half million paralysis sufferers (including six hundred and fifty thousand Californians)—and people in other countries who might have benefited from research discoveries.  They lost.

 

2. The families of paralyzed children or adults, those who provide the endless and exhausting physical care for their loved one, or pay to have it done. They lost.

3. American taxpayers lost. So long as paralysis remains incurable, the cost of programs like Medicare and Medi-Cal can only increase. Medical care for just one paralyzed person can cost three to five million dollars—few have that kind of money, so they look to government for help. They lost too–basically, everybody that hopes for cure lost.

Chairman Fuentes is an honorable man, with strict principles. As Appropriations chair, it is his difficult job to oversee any bills having to do with tax money. (I am still not entirely clear on why a bill which had no tax money at all was even seen by his committee, but that was what happened.)

Mr. Fuentes has a philosophical stance that he does not approve of funding government by fees or fines. A reasonable position, to be sure.

But does not every rule have an exception? Even a strict vegetarian might eat meat if they were starving, and a little flexibility would have been appreciated. Certainly, we met the chair’s objections more than half-way—we offered a 2/3 compromise, cutting back from $3 to $1. We even had an “opt-out” provision, so any county which did not like the program could choose not to participate.

Our offers were ignored.  

But something Chairman Fuentes said at the hearing really stuck with me.

First, he said that never in memory had California legislators asked for proportionately so little money— roughly $1.5 billion in new programs—and of that, only $60 million would be approved by his committee.

He also said (and just for a second, his glance flicked to Roman in his wheelchair) that “programs would only be funded the right way”— the right way? What does that mean?

Consider what California faces today.

Under the present tax law, (Prop 13) our state cannot really tax the rich any more, no matter how fabulously wealthy they become, nor how great the need.  Prop 13 requires a 2/3 majority to increase any taxes whatsoever, and Republicans take a pledge to never support any new taxes, no matter what. This allows a small number of Republicans to block the will of the majority.

It’s great if you are rich, but sometimes not too wonderful for the rest of us.

So if we cannot use tax money– and the Chair won’t let us penalize bad drivers who may cause paralysis—  what exactly is “the right way” to fund paralysis cure research?

What legislative path would Chairman Fuentes suggest? This is not a rhetorical question, I genuinely want to know. Because our bill will be coming back, one way or another, and I need to find a way to earn the Chairman’s support.

If we can’t use taxes, and he won’t let us use fines—what are we supposed to do?

Maybe you could ask him too.  Here is his website.

http://asmdc.org/members/a39/

 I would appreciate it if you sent him a brief email, asking him why he denied AB 190, the zero-tax funding source for the Roman Reed Spinal Cord Injury Research Act, and what changes would he require to let the bill survive his committee?

Also, if you live in Chairman Fuentes’ district, consider writing a letter to the editor of your local newspaper, asking him what better alternative could he come up with, since he shot down AB 190?

Even if you don’t live in his district, here is the biggest newsweekly in his area.

http://www.echo-media.com/mediaDetail.php?ID=14543.

I will be writing letters questioning the decision, and maybe you would help with one as well.

For example, this letter from my friend Ray Lee, a Parkinson’s advocate in Arizona, who asked:

“Why did  the committee prevent AB  190 from going forward?  What were the arguments against a  $3.00 fine for speeders?  Who was against it? In the  1960’s I volunteered in the spinal cord injury ward of a Long Beach California hospital.  Do patients have to wait another half century for help?
Rayilyn Brown
Past Director AZNPF
Arizona Chapter National Parkinson Foundation

So what comes next?

We try again. We can fail as many times as needed, so long as we eventually win.   

Fortunately, the leader of our bill, Bob Wieckowski (D-Fremont) has the vision and the strength to carry on. After the bill was shot down, it would have been very easy for him just to shake our hands and wish us well. We would have parted friends.

But in the office after Chairman Fuentes offered the ten-second announcement of doom, the conversation was NOT about commiseration and blame—it was “where do we go next?”

Maybe there are some internal negotiation moves that can be tried. He will be investigating those.

Or maybe we just start all over again.

One possibility might be called Pocket Change for Paralysis Cure.  

Here is how it would work.

It would still be a traffic ticket add-on, because that is the most direct connection.

But it would be so small it should not offend anyone.

We would not ask for fifteen dollars per ticket, as New York did, nor $100 per violation, as South Carolina does to this very day–  nor three dollars, nor even one dollar, our fallback position this time.

Instead we would request the staggering sum of– fifty cents.

Fifty cents. Half a buck, a handful of pennies– you have that much in your couch cushions.

But if that tiniest of amounts was gained from each of California’s three million plus traffic violators, (3,800,000 last year)  it would net  $1.9 million, allowing the research program to continue.

It would cost the taxpayer exactly nothing.

Would any politician grudge us fifty cents to fund research for paralysis cure?

Only one way to find out.

Stay tuned.

Papers covering the San Fernando Valley Area

Name Phone/Fax/Internet Address/Email Address
BUSINESS LIFE MAGAZINE (818) 240-7088 / (818) 240-7320

http://www.businesslife.com

editorial@businesslife.com

CALIFORNIA JOURNAL FOR FILIPINO AMERICANS (310) 532-6238 / (310) 532-6242 – no faxes accepted

http://www.caljournal.com

cjfil@earthlink.net

CONTACTO MAGAZINE (818) 241-4073

http://www.contactomagazine.com

newsroom@contactomagazine.com

DAILY NEWS OF LOS ANGELES (818) 713-3000 / (818) 713-0058

http://www.dailynews.com

feedback@dailynews.com

 

DAILY NEWS – GLENDALE BUREAU

(818) 546-3315 / (818) 546-3310

 

DAILY NEWS – LOS ANGELES BUREAU

(213) 978-0390 / (213) 617-0223

EL AVISO (Magazine) (323) 586-9199 / (323) 589-9395

http://www.elaviso.com

ramiro@elaviso.com

EL SALVADOR DIA A DIA (323) 737-7910 / (323) 737-1916
HOY (213) 237-3001 / (213) 237-4928

www.vivelohoy.com

JACKSON PUBLISHING COMPANY (323) 934-6397 / (323) 965-1803

http://www.jacksonpublishing.com

editor@jacksonpublishing.com

LA GUIA FAMILIAR (818) 882-9200 / (818) 882-2625

http://www.latinpublications.com

pr@latinpublications.com

LA OPINION (213) 869-2011 / (213) 896-2077

http://www.laopinion.com

editorial@laopinion.com

LA VOZ LIBRE (213) 488-0271 / (213) 388-2053

amprada@pacbell.net

L’ITALO AMERICANO (818) 767-3413 / (818) 767-1410

http://www.italoamericano.com

geninfo@italoamericano.com

LOS ANGELES TIMES (213) 237-5000 / (213) 237-7190

http://www.latimes.com

metrodesk@latimes.com

LOS ANGELES BAY NEWS OBSERVER Valley Edition (Inglewood / San Fernando Valley) observernews@gmail.com
LOS ANGELES METROPOLITAN GAZETTE (818) 782-8695 / (818) 782-4724

Lametroinc@yahoo.com

NEW ARMENIA DAILY (818) 246-6468

newarmeniadaily@aol.com

SAN FERNANDO VALLEY BUSINESS JOURNAL (818) 676-1950 / (818) 676-1747

http://www.sfvbj.com

research@sfvbj.com

SAN FERNANDO VALLEY SUN (818) 365-3111 / (818) 898-7135

http://www.sanfernandosun.com

editor@sanfernandosun.com

TAIWAN DAILY NEWS (626) 455-0228 / (626) 455-0898

http://www.taiwandaily.net

VALLEY VOICE (310) 429-0484 / (818) 739-6854

www.evalleyvoice.com

VALLEY NEWS GROUP (818) 223-9545 / (818) 223-9552

www.valleynewsgroup.com

 

 

 

 

 

 

 

 

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High Noon for Paralysis Cure

HIGH NOON FOR PARALYSIS CURE RESEARCH?

By Don C. Reed

Three twenty-two AM.

Couple hours from now, and I will go to my son Roman’s house. His 13-year-old son (Roman part two) has a baseball tournament in Temecula, so he and mom Terri are driving down as well as  Kate my two year-old angel, certifiably most beautiful grand-daughter in the history of the world.  (This must be true, as that fact is recorded in the official documents of the California Institute for Regenerative Medicine, because I announced it in the public comment portion of the meeting).

Roman senior and Jason (age six and with a school schedule plus Tae Quan Do practice) won’t be going.

So Gloria will drop Jason off at school and I will help Roman get out of bed.

And then we will drive to Sacramento to fight paralysis.

High Noon.

Remember the classic Gary Cooper movie, where the bad guy and his evil buddies are coming to kill the good guy at 12:00 noon?

Twelve o’clock is when  the Appropriations Committee hearing on Assembly Bill 190 (Wieckowski, D-Fremont) will decide if California will add on a small fine for traffic violations.

In the Gary Cooper movie, nobody helped the Sheriff, who stood alone. (At the very last minute, his Quaker girlfriend blew away the bad guy, but she was the only one.)

That is so NOT what happened with us.

Ever since the Roman Reed Spinal Cord Injury Research Act  began, we have been helped not only by the disability, medical, and research community—but also by and the California political system itself—both sides of the aisle.

Now, I am proud to be a Democrat, and will be one till my dying day. I will trashtalk GOP policy till the cows come home, explaining in great detail why Pelosi is right and Boehner is wrong.

But not this day.

Because I remember two key votes on the renewal of the Roman Reed Spinal Cord Injury Research Act, in which we got every vote except one  in the Capitol, on both sides of the aisle. (One person, Tom Campbell, voted against the RR Act in 1994, other than that, we got everybody’s vote.)

Think of that. Every Republican, every Democrat.  I remember the great Democrat  John Burton, who fought so eloquently for us on the Senate Floor– and I also reember Sam Aanestadt, (R-Grass Valley) who supported us way back when—and suggested we should be part of the UC system, which we are.

(I hasten to add that when I say “our law”, I mean that in the same way we say “our” America. There is a private foundation, the Roman Reed Foundation, which is basically  Roman puts on golf tournaments and contributes every penny to research, primarily the Stanford Partnership for Spinal Cord Injury and repair. That has nothing to do with the State program.)

Our law was occasionally controversial– before Prop 71 made California the stem cell center of the world, Roman’s law funded the first use of the Bush Presidentially-approved embryonic stem cells– but when push came to shove, it was still approved by both sides of the aisle.

That’s why, when I see that beautiful Sacramento capitol building, there is always a moment when I feel like taking off my hat (if I had one) and saluting.

If we pass the committee today, we have a week to rally the entire assembly before the vote, and then we begin again on the Senate side.

And if we do not pass the committee?

First, I will go for ice cream.  I found this wonderful gelato place on 10th street across from the Capitol, and they have spumoni like no other—swathes of chocolate fudge and just jammed with chunks of candied fruit and nuts—heaven in a dish.

There are three sizes; I will be getting the large one, which should come with its own wheelbarrow, there is so much.

I will stuff myself, gain a couple pounds- and get ready for next year.

Because whatever happens today, thumbs up or thumbs down, the Roman Reed Spinal Cord Injury Research Act will go on.

The Roman Reed Act will never die. It exists now, voted into law in perpetuity.

There is just no money for it right now, in Sacramento. The UC system can and will fight for it, trying to find a little bit of money to keep it going, but that will be tough, considering they have cut to the bone.

Patient advocates and progressives in both parties will find a way to fund it. We asked for $3 a ticket, and if that is too much, we will take less—we have made clear we will walk back our request even to just a single dollar a ticket.

And  if I have to come back next year and try again, just asking for fifty cents a ticket—I will do that, if that’s what it takes.

Think of that—pocket change.  What can you buy for a handful of pennies?

Maybe, paralysis cure?

That negligible fine increase would mean almost nothing to the violator, zero cost to the taxpayer—but it could mean everything to families with a paralyzed member.

So, think good thoughts for us today, at shining noon in Sacramento. I hope and expect that I will have good news to report to you next time.

But whatever happens, we will continue.

If we never give up, we can only win, or die.  And everybody dies, so why not try?

Read Full Post »

One phone call…

 Would you make one phone call if it might bring cure to paralysis?  Right now, AB 190, the bill to restore funding to the Roman Reed Spinal Cord Injury research Act, hangs in the balance. Please call one of the below, depending on your political party. You might make the difference between success and failure.

  Felipe Fuentes – Chair  Dem-39    (916) 319-2039
Assemblymember.Fuentes@assembly.ca.gov
cc: Geoff.long@asm.ca.gov (Chair Fuentes legislative director

Diane L. Harkey – Vice Chair  Rep-73   (916) 319-2073
Assemblymember.Harkey@assembly.ca.gov  

Sharon.Gonzalves@asm.ca.gov  (Vice Chair Harkey’s legislative director)

Roman and I will be in Sacramento this morning. Please everybody help us this last day– make a call to one or both of the above people. It will cost you five minutes, and it could make the difference between the bill being heard, or not. We believe we have the votes to win, but the chair must be convinced. If he takes a neutral or positive position, we will probably win. But if he opposes…

Below is another article on the subject just published in Huffington Post.

BTW, Roman and I visited Geron yesterday, and saw some of the research in action which the RR Act began–I wish anyone even considering voting against AB 190 could see what we saw, and listen to the scientists as they struggle towards cure.

Thanks,

Don

NOT TOO LATE TO FIGHT FOR CURE: Ten Reasons to Support California 
Spinal Cord Research

By Don C. Reed

This Friday, AB 190 (Wieckowski, D-Fremont) will be voted on in the 
powerful Appropriations Committee. AB 190 would give renewed life to 
the Roman Reed Spinal Cord Injury Research Act, one of the most 
effective research programs ever done.

Here are ten reasons to vote yes—plus 47 key groups and supporters—
and the people you can contact right now to make a difference.

1. With zero cost to taxpayers, AB 190 will fund California’s highly 
successful Roman Reed Spinal Cord Injury Research Act of 1999, named 
after a paralyzed Californian.

2. AB 190 will impose a $3 penalty on all moving traffic violations. 
As car crash is a major (46%) cause of spinal cord injury, violators 
should help solve the problem they inflict on others.

4. Operated by the University of California system, the program 
already has its core lab and headquarters set up at the Reeve-Irvine 
Research Institute, UC Irvine.

5. California will continue to profit financially. A “money 
magnet”, the Act attracted $64 million in new revenues from the 
National Institutes of Health and other out-of-state sources.

6. The biomedical industry, mainstay of the California economy, also 
benefits; biomed companies (like California Stem Cells, Inc.) spring 
from successful scientists’ advances.

7. Although “Roman’s Law” funded the first use of President 
Bush’s approved stem cell lines, leading to Geron’s historic human 
trials, AB 190 concentrates primarily on the “everything else” that 
is needed for cure: including ways to turn on the body’s natural 
repair engines, and turn off the “inhibitors” of cure; to ease life-
threatening blood-pressure changes; diminish the “secondary injury” 
that often doubles the damage to the spine; build biological 
“bridges” for new nerves to grow across; to diminish chronic pain, 
restore bowel and bladder control, and much more.

8. In 175 peer-reviewed publications, Roman’s law has advanced the 
field of neurology, with “carry-over” impact on other conditions, 
including ALS (Lou Gehrig’s disease), Spinal Muscular Atrophy, 
Traumatic Brain Injury, Multiple Sclerosis—indeed, one treatment 
developed for Spinal Cord Injury may offer help for Irritable Bowel 
Syndrome!

9. Practical applications range from small to staggering: a new Petri 
dish, (patent pending) which sorts cells by electrical potential; a 
helmet-glove device to return the power of grip to frozen fingers; 
robotic “boots” to lower rehabilitation costs; a way to harness 
brainwaves, so a completely paralyzed person can operate a computer by 
thought alone; even a new paralysis “model”, humanely designed so a 
monkey would have just one finger paralyzed.

10.  The problem AB 190 addresses is enormous. An estimated 5.6 
million Americans suffer paralysis today: California has roughly 
650,000 paralyzed individuals. The financial costs are staggering.  
New paralysis sufferers face bills averaging $775,000 in the first 
year alone, and are an immense and continual drain on Medi-Cal and 
Medicare. The agony of individuals and the stress on their families 
cannot be calculated.

For more information, contact: Jeff Barbosa:(916) 319-2020  Jeff.Barbosa@asm.ca.gov

 

Here are the members of the approps list, if you have time.

Geoff.long@asm.ca.gov for chair Felipe Fuentes

Sharon.gonsalves@asm.ca.gov for vice-chair Diane L. Harkey

Camille.wagner@asm.ca.gov  for Assembleman Steven Bradford

Sandy.michioku@asm.ca.gov for Bob Blumenfeld

Mark.higgins@asm.ca.gov for Mike Davis

Aaron.moreno@asm.ca.gov for Mike Gatto

Darryl.lucien@asm.ca.gov  for Nora Campos

Tom.white@asm.ca.gov  for Assembly majority leader Charles Calderon

Matt.hedges@asm.ca.gov for Donald P. Wagner

Felipe.lopez@asm.ca.gov for Isadore Hall

Luis.sanchez@asm.ca.gov for Ricardo Lara

Danny.martinez@asm.ca.gov for Chris Norby

Chris.norden@asm.ca.gov for Jim Nielsen

Kelly.shaw@asm.ca.gov for Tim Donnely

Ania.garbien@asm.ca.gov for Jose Solorio

Gibran.maciel@asm.ca.gov for Jerry Hill

Tiffani.alvidrez@asm.ca.gov for Holly Mitchell

 

 

AB 190 (Wieckowski, D-Fremont) SUPPORT LIST

From across America, support is strong for AB 190.  Distinguished individuals and organizations include:

Paul Berg (Nobel Prize winner), Stanford University School of Medicine

Jeffrey A. Bluestone, Executive Vice Chancellor and Provost, University of California, San Francisco

Rayilyn Brown, Arizona Chapter National Parkinson Foundation

Nancy Brackett, University of Miami School of Medicine

Nina Brown, Founding Boardmember, Lorraine Chammah, President,
Texans for Advancement of Medical Research

California Healthcare Institute (CHI, representing more than 100 biomedical companies).

Susan Chandler, Treasurer, California Disability Rights Organization

Stemcyte, President Calvin Cole

California Chiropractic Association, Kassie Donoghue, DC, Government Affairs Chair

W. Dalton Dietrich, Ph.D., Miami Project to Cure Paralysis

John Dutra, (D-Fremont, retired)  author, Roman Reed Spinal Cord Injury Research Act of 1999

V. Reggie Edgerton, UCLA Professor, Brain Research Institute

Brooke Ellison,(Christopher Reeve’s last project was directing a movie about paralyzed Brooke)

Lucy Fisher and Doug Wick, Sony Pictures

Jeannie Fontana, CEO SALSa, Inc. Solutions for ALS

Eric Fingerhut, Chancellor, University System of Ohio

University of California,Karen French, Associate Director, Legislative Affair

Leeza Gibbons, Leeza’s Place (Alzheimer’s)

Lawrence Goldstein, Director, UCSD Stem Cell Program

Hans Keirstead, (researcher whose Geron work now in world’s first clinical trials stem cells), UC-Irvine Professor, Chair, Scientific Advisory Board, California Stem Cell, Inc.

Stephanie A. Kolakowsky-Hayner, Director of Rehab Research, Santa Clara Valley Medical Center

Suzy Kim, Medical Director, SCI Acute Care, UCI Medical Center

Bob Klein, Founder,Proposition 71, the Californians for Stem Cell Research and Cures Initiative

Dena Ladd, Executive Director, Missouri Coalition for Lifesaving Cures

Sherry Lansing, Chair, Sherry Lansing Foundation
Academy Award Winner Jean Hersholt Humanitarian Award

Stem Cells Inc., Martin McGlynn, President & CEO

Karen Miner, Chair, Research for Cure

Ed Monuki, Associate Professor, UC Irvine

Rania Nasis, General Manager, CA Stem Cell, Inc.

Richard Patterson, M.D., Santa Clara Valley Medical Center

Renee A Reijo Pera, Director of Reproductive and Stem Cell Biology Division, Stanford University

Dan Perry, President, CEO, Alliance for Aging Research, Washington, DC

Claire Pomeroy, Chief Executive Officer, UC Davis Health Department

Brock Reeve, Executive Director, Harvard Stem Cell Institute, (Christopher Reeve’s brother)

Bill Remak, Chairman, California Hepatitis Task Force

Duane Roth, CEO, CONNECT

Rose Marie Salerno, VA Palo Alto Health Care System

Lori Sames, Executive Director, Hannah’s Hope Fund

Bernie Siegel, founder and chair, Stem Cell Action Coalition (70 groups), and Genetics Policy Institute

Marilyn Smith, Executive Director, Unite 2 Fight Paralysis

Michael Sofroniew, M.D., Professor, UCLA

Texans for Stem Cell Research, David L. Bales, Chairman

Jim Bennett, Spinal Cord Injury Research Foundation, Rutgers University, New Jersey

Christopher & Dana Reeve Foundation, Peter T. Wilderotter, President & CEO

Shinya Yamanaka, Ph.D  (inventor of induced Pluripotent Stem cells), Director, Center for iPS Cell Research and Applications, Kyoto University, Japan

Fanyi Zheng, Professor and Associate Director, Shanghai Stem Cell Institute, Jiao Tong University School of Medicine, China

Jerry Zucker (movie director, Ghost, Airplane, Naked Gun), Founding board member, CURESNOW

Read Full Post »

Crunch Time for Paralysis Cure@

If you want California spinal cord injury research for cure to move forward, (as is the purpose of Assembly Bill 190, Wieckowski, D-Fremont) there are some Legislative Aides who need to hear from you!

Write to the aide—the member’s name follows. Remember, just a sentence or two is all that is needed! If you want ideas, take a look at the latest I put together, at the bottom. If you only have time to do one, make it the top, aide for the chairman, Felipe Fuentes, and the vice-chair, Diane Harkey

Geoff.long@asm.ca.gov for chair Felipe Fuentes

Sharon.gonsalves@asm.ca.gov for vice-chair Diane L. Harkey

Camille.wagner@asm.ca.gov  for Assembleman Steven Bradford

Sandy.michioku@asm.ca.gov for Bob Blumenfeld

Mark.higgins@asm.ca.gov for Mike Davis

Aaron.moreno@asm.ca.gov for Mike Gatto

Darryl.lucien@asm.ca.gov  for Nora Campos

Tom.white@asm.ca.gov  for Assembly majority leader Charles Calderon

Matt.hedges@asm.ca.gov for Donald P. Wagner

Felipe.lopez@asm.ca.gov for Isadore Hall

Luis.sanchez@asm.ca.gov for Ricardo Lara

Danny.martinez@asm.ca.gov for Chris Norby

Chris.norden@asm.ca.gov for Jim Nielsen

Kelly.shaw@asm.ca.gov for Tim Donnely

Ania.garben@asm.ca.gov for Jose Solorio

Gibran.maciel@asm.ca.gov for Jerry Hill

Tiffani.alvidrez@asm.ca.gov for Holly Mitchell

Dear ________:

This Friday, your leader will be voting on AB 190 (Wieckowski, D-Fremont) in Appropriations. Here are ten reasons to vote yes—and 47 key groups and supporters.

1. With zero cost to taxpayers, AB 190 will fund California’s highly successful Roman Reed Spinal Cord Injury Research Act of 1999, named after a paralyzed Californian. 

2. AB 190 will impose a $3 penalty on all moving traffic violations. As car crash is a major (46%) cause of spinal cord injury, violators should help solve the problem they inflict on others.

4. Operated by the University of California system, the program already has its core lab and headquarters set up at the Reeve-Irvine Research Institute, UC Irvine.

5. California will continue to profit financially. A “money magnet”, the Act attracted $64 million in new revenues from the National Institutes of Health and other out-of-state sources.

6. The biomedical industry, mainstay of the California economy, also benefits; biomed companies (like California Stem Cells, Inc.) spring from successful scientists’ advances.

7. Although “Roman’s Law” funded the first use of President Bush’s approved stem cell lines, leading to Geron’s historic human trials, AB 190 does not focus on stem cells, and has not funded any such research since 2008. Instead, we concentrate on the “everything else” that is needed for cure: including ways to turn on the body’s natural repair engines, and turn off the “inhibitors” of cure; to ease life-threatening blood-pressure changes; diminish the “secondary injury” that often doubles the damage to the spine; build biological “bridges” for new nerves to grow across; to diminish chronic pain, restore bowel and bladder control, and much more.

8. In 175 peer-reviewed publications, Roman’s law has advanced the field of neurology, with “carry-over” impact on other conditions, including ALS (Lou Gehrig’s disease), Spinal Muscular Atrophy, Traumatic Brain Injury, Multiple Sclerosis—indeed, one treatment developed for Spinal Cord Injury is now in human trials for Irritable Bowel Syndrome! 

9. Practical applications range from small to staggering: a new Petri dish, (patent pending) which sorts cells by electrical potential; a helmet-glove device to return the power of grip to frozen fingers; robotic “boots” to lower rehabilitation costs; a way to harness brainwaves, so a completely paralyzed person can operate a computer by thought alone; even a new paralysis “model”, humanely designed so a monkey would have just one finger paralyzed.

10.  The problem AB 190 addresses is enormous. An estimated 5.6 million Americans suffer paralysis today: California has roughly 650,000 paralyzed individuals. The financial costs are staggering.  New paralysis sufferers face bills averaging $775,000 in the first year alone, and are an immense and continual drain on Medi-Cal and Medicare. The agony of individuals and the stress on their families cannot be calculated.  

For more information, contact: Jeff Barbosa: (916) 319-2020  Jeff.Barbosa@asm.ca.gov.

ENDORSERS OF AB 190 (in alphabetical order)

Letters of support for AB 190 have poured in from across America and around the world. The men and women who put their good names behind AB 190 read like a Who’s Who of Science. From Paul Berg, winner of  the Nobel Prize for DNA research, to Shinya Yamanaka who invented what may be the replacement for embryonic stem cells, those who understand spinal cord injury are backing California. 

Please take a moment and glance through this amazing partial list.

  1. Paul Berg (Nobel Prize winner for DNA research) Stanford University School of Medicine
  2. Jeffrey A. Bluestone, Executive Vice Chancellor and Provost, UC San Francisco
  3. Rayilyn Brown, President, Arizona Chapter National Parkinson Foundation
  4. Nancy Brackett, Ph.D., U of Miami School of Medicine
  5. Lorraine Chammah, President, Texans for Advancement of Medical Research
  6. Christopher & Dana Reeve Foundation, Peter T. Wilderotter, President & CEO
  7. California Healthcare Institute (representing more than 100 biomedical corporations)
  8. Susan Chandler, Treasurer, California Disability Rights Organization
  9. Stemcyte, President Calvin Cole
  10. California Chiropractic Association, Kassie Donoghue, DC, Government Affairs Chair
  11. W. Dalton Dietrich, Ph.D., Miami Project to Cure Paralysis
  12. John Dutra, (D-Fremont, retired)Author, Roman Reed Spinal Cord Injury Research Act of 1999
  13. V. Reggie Edgerton, UCLA Professor, Brain Research Institute
  14. Brooke Ellison(Christopher Reeve’s last project was directing a movie about Brooke)
  15. Lucy Fisher and Doug Wick of Red Wagon Films, Sony Pictures
  16. Jeannie Fontana. CEO SALSa, Inc. Solutions for ALS
  17. Eric Fingerhut, Chancellor, University System of Ohio
  18. University of California, Karen French, Associate Director, Legislative Affair
  19. Leeza Gibbons, Leeza’s Place (Alzheimer’s)
  20. Lawrence Goldstein, Director, UCSD Stem Cell Program
  21. Hans Keirstead,  Chair, Scientific Advisory Board, California Stem Cell, Inc.
  22. Stephanie Kolakowsky, Director Rehabilitation Research, Santa Clara Valley Medical Center
  23. Suzy Kim, Medical Director, Spinal Cord Injury Acute Care UCI Medical Center
  24. Bob Klein, Founder,  Proposition 71, Californians for Stem Cell Research and Cures Initiative
  25. Dena Ladd, Executive Director, Missouri Coalition for Lifesaving Cures
  26. Sherry Lansing, winner of the Academy Award Jean Hersholt Humanitarian Award
  27. Stem Cells Inc., Martin McGlynn, President & CEO
  28. Karen Miner, Chair, Research for Cure
  29. Ed Monuki, Associate Professor, UC Irvine (inventor new cell-sorting machine)
  30. Rania Nasis, General Manager, CA Stem Cell, Inc.
  31. Richard Patterson, M.D., Santa Clara Valley Medical Center
  32. Renee A Reijo Pera, Director of Reproductive and Stem Cell Biology Division, Stanford
  33. Dan Perry, President, CEO, Alliance for Aging Research, Washington, DC
  34. Claire Pomeroy, Chief Executive Officer, UC Davis Health Department
  35. Brock Reeve, Executive Director, Harvard Stem Cell Institute
  36. Bill Remak, Chairman, California Hepatitis Task Force
  37. Duane Roth, CEO, CONNECT
  38. Rose Marie Salerno, VA Palo Alto Health Care System
  39. Lori Sames, Executive Director, Hannah’s Hope Fund
  40. Bernie Siegel, founder and chair: Stem Cell Action Coalition (72 groups)
  41. Marilyn Smith, Executive Director, Unite 2 Fight Paralysis
  42. Michael Sofroniew, Professor, UCLA
  43. Jim Bennett, Spinal Cord Injury Research Foundation, Rutgers University, New Jersey
  44. Shinya Yamanaka, Ph.D   Director, Center for iPS Cell Research, Kyoto University, Japan
  45. Texans for Stem Cell Research, David L. Bales, founder
  46. Fanyi Zheng, Associate Director, Shanghai Stem Cell Institute, Jiao Tong University, China
  47. Jerry Zucker (movie director, Ghost, Airplane, Naked Gun) Founding member, CURESNOW.

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CUB SCOUTS AGAINST A FOREST FIRE?  Despite Odds, Supporters of Paralysis Cure Research Can Win

By Don C. Reed

On  May 27th, in Sacramento, California, there will be a legislative forest fire.  In the Appropriations committee, dozens of good bills will be considered. Most will die.  

Assembly Bill 190, (Wieckowski, D-Fremont) our bill to fight paralysis– must survive. 

But first, a question about a real-life forest fire. If you were an 8-year-old cub scout, and you were out in the wilderness and saw a forest fire approaching like a wall of fire, and there was no way to out run it—what could you do to survive? The answer might surprise you.  (No, you should not lie down in a nearby stream; that would just boil you alive.) I will tell you later what two brave cub scouts actually did.

Back to the fight against paralysis. Wednesday my paralyzed son Roman Reed and I drove to Sacramento, to meet legislative aides of members of Appropriations committee. We were there to support Assembly Bill 190: a $3 fine for bad driving, money to go to the Roman Reed Spinal Cord Injury Research Act.

How are we doing? To the surprise of many, we passed our first committee meeting, public safety, 4-2. Now we face a larger and more difficult committee, the 17-member Appropriations.

 If we can pull off an against-the-odds upset victory here, it will be because of the groups and individuals who have honored AB 190 with their support.

At the bottom of this message I have posted a sampling of our friends.

Glance through this list, and notice where they come from: Texas, Florida, New Jersey, China, Arizona, New York, California, Washington DC, Japan,  across America and beyond: wherever people work to bring a cure for paralysis, there are friends for AB 190.

You want to help us too? Please do!  All we need is a quick email (or phone call) of support. Nothing fancy is required.

Here is a SAMPLE LETTER. Important: on the Intro line of your email, put: AB 190 APPROPRIATIONS

Inside start off with your name, street address, zip, telephone, so they know you are a real person.

RE: Support for Assembly Bill 190 (Wieckowski, D-Fremont)
 
Dear (NAME OF ASSEMBLYPERSON):

Assembly Bill 190 would charge bad drivers a $3 add-on fine, all proceeds to fund the Roman Reed Spinal Cord Injury Research Act, which is administered through the UC System.

As car crash is the number one cause of spinal cord injury, it is only fair that reckless drivers should help pay for the misery they cause.

“Roman’s Law” has been a huge success for California in every way, including financial. It is a “money magnet” because it brought in more than four times more money than it cost the state . In taxpayer dollars, it spent $14 million over the ten years of its existence—and attracted  $64 million in add-on grants from out of state, new money for California.

Paralysis is wide-spread, with an estimated 650,000 Calfornians afflicted. Nationally, approximately 5.6 million Americans suffer some degree of paralysis. Because paralysis sufferers may face lifetime medical bills of $3-5 million dollars each,  they are almost always forced onto the Medicare and/or Medi-Cal rolls, at enormous cost to the taxpayers.

In the past, the program funded stem cell research in the past, including what became the world’s first human trials on newly paralyzed people, the famous Geron trials. However, stem cells are not our main focus, now that California has Proposition 71’s stem cell program in place. Since 2008, we have funded no stem cell research at all. 

We focus  mainly on the “everything else”, problems and possibilities of a condition long considered impossible to cure. For instance, when an injury happens, the damage to the spine may be a small hole—but that wound will actually grow inside the spine, a “secondary injury” as the body’s immune system fights back, and increases the size of the injury, and its severity. A person entering the hospital still able to use his hands could lose that ability.  There may be a way to limit that secondary injury, by controlling the immune response.

Other targets for investigation include chronic pain (some paralytics live in constant agony), bowel and bladder control, life-death fluctuations in blood pressure, and much more.

Even the smallest return of function is vital; when my son recovered the use of the triceps muscles of his arms, that allowed him to drive an adapted van—instead of having to rely on a paid attendant.   

AB 190 is the hope of healing: a zero-tax way to fund research for cure. (for more info, go to my website, www.stemcellbattles.com)

Please support AB 190. 

(If you want to mention a family member or friend who suffers any form of paralysis, that is helpful, but not mandatory.)

Thank you.

 YOUR NAME
 
Now, remember  those cubscouts, faced with a roaring forest fire? They dug two little graves for themselves, climbed inside, put their shirts over their faces, and pulled the dirt back over them, as best they could. The forest fire roared over them. The sound was deafening, the heat almost unbearable. But when the blaze had passed, two little kids sat up. The sweat from their bodies turned the dirt to mud, they both had mild sunburn from the heat—but they survived.

And so may we, if we are equally determined and creative.

Here are the members of the committee: write or call at least the top two, the chair and vice chair.

 Felipe Fuentes – Chair  Dem-39 (916) 319-2039
Assemblymember.Fuentes@assembly.ca.gov

Diane L. Harkey – Vice Chair  Rep-73 916) 319-2073
Assemblymember.Harkey@assembly.ca.gov

 Charles M. Calderon  Dem-58 (916) 319-2058
Assemblymember.Calderon@assembly.ca.gov   

Mike Gatto  Dem-43 (916) 319-2043
Assemblymember.Gatto@assembly.ca.gov

 Donald P. Wagner, Rep-70 (916) 319-2070
Assemblymember.Wagner@assembly.ca.gov

Steven Bradford  Dem-51 (916) 319-2051
Assemblymember.Bradford@assembly.ca.gov

 Bob Blumenfield  Dem-40 (916) 319-2040
Assemblymember.Blumenfield@assembly.ca.gov

 Isadore Hall III  Dem-52 (916) 319-2052
Assemblymember.Hall@assembly.ca.gov

Jim Nielsen  Rep-2 (916) 319-2002
Assemblymember.Nielsen@assembly.ca.gov

Chris Norby  Rep-72 (916) 319-2072
Assemblymember.Norby@assembly.ca.gov

 Tim Donnelly  Rep-59 (916) 319-2059
Assemblymember.Donnelly@assembly.ca.gov
 
 Jose Solorio  Dem-69 (916) 319-2069
Assemblymember.Solorio@assembly.ca.gov

 Ricardo Lara  Dem-50 (916) 319-2050
 Assemblymember.Lara@assembly.ca.gov

 Holly J. Mitchell  Dem-47 (916) 319-2047
Assemblymember.Mitchell@assembly.ca.gov

 Jerry Hill  Dem-19 (916) 319-2019
 Assemblymember.Hill@assembly.ca.gov 

Mike Davis  Dem-48 (916) 319-2048
Assemblymember.Davis@assembly.ca.gov

 Nora Campos  Dem-23 (916) 319-2023
Assemblymember.Campos@assembly.ca.gov

Who has helped us already? Below, in alphabetical order, are just a few of the amazing friends who have already endorsed AB 190. (I hope they will also call or email the chair and vice-chair of this committee!)

Texans for Stem Cell Research
David L. Bales, Chairman

Jim Bennett
Spinal Cord Injury Research Foundation, Rutgers University, New Jersey

Paul Berg (Nobel Laureate)
Stanford University School of Medicine

Jeffrey A. Bluestone, Ph.D, Executive Vice Chancellor and Provost
University of California, San Francisco

Rayilyn Brown
Arizona Chapter National Parkinson Foundation

Nancy Brackett, Ph.D.
U of Miami School of Medicine

Nina Brown, Founding Boardmember, Lorraine Chammah, President
Texans for Advancement of Medical Research

California Healthcare Institute

Susan Chandler
Treasurer, California Disability Rights Organization

Stemcyte
President Calvin Cole

California Chiropractic Association
Kassie Donoghue, DC, Government Affairs Chair

W. Dalton Dietrich, Ph.D.
Miami Project to Cure Paralysis

John Dutra, California assemblymember (D-Fremont, retired)
Author, Roman Reed Spinal Cord Injury Research Act of 1999

V. Reggie Edgerton, UCLA Professor
Brain Research Institute

Brooke Ellison
(Christopher Reeve’s last project was directing a movie about Brooke)

Jeannie Fontana
CEO SALSa, Inc. Solutions for ALS

Eric Fingerhut, Chancellor
University System of Ohio

University of California
Karen French, Associate Director, Legislative Affair

Leeza Gibbons
Leeza’s Place (Alzheimer’s)

Lawrence Goldstein
Director, UCSD Stem Cell Program

Hans Keirstead, (researcher whose Geron work now in world’s first clinical trials stem cells)
UC-Irvine Professor, Chair, Scientific Advisory Board, California Stem Cell, Inc.

Stephanie A. Kolakowsky-Hayner, PhD
Director of Rehabilitation Research, Santa Clara Valley Medical Center

Suzy Kim, Medical Director, SCI Acute Care
UCI Medical Center

Robert N. Klein, Founder,
 Proposition 71, the Californians for Stem Cell Research and Cures Initiative

Dena Ladd
Executive Director, Missouri Coalition for Lifesaving Cures

Sherry Lansing
Chair, Sherry Lansing Foundation
Academy Award Winner Jean Hersholt Humanitarian Award

Stem Cells Inc.
Martin McGlynn, President & CEO

Karen Miner
Chair, Research for Cure

Ed Monuki
Associate Professor, UC Irvine

Rania Nasis
General Manager, CA Stem Cell, Inc.

Richard Patterson, M.D.
Santa Clara Valley Medical Center

Renee A Reijo Pera, Ph.D.
Director of Reproductive and Stem Cell Biology Division, Stanford University

Dan Perry, President, CEO
Alliance for Aging Research, Washington, CD

Claire Pomeroy,
Chief Executive Officer, UC Davis Health Department

Brock Reeve
Executive Director, Harvard Stem Cell Institute

Bill Remak
Chairman, California Hepatitis Task Force

Duane Roth
CEO, CONNECT

Rose Marie Salerno
VA Palo Alto Health Care System

Lori Sames
Executive Director, Hannah’s Hope Fund

Bernie Siegel, founder and chair:
Stem Cell Action Coalition
Genetics Policy Institute

Marilyn Smith
Executive Director, Unite 2 Fight Paralysis

Michael Sofroniew, M.D.
Professor, UCLA

Christopher & Dana Reeve Foundation
Peter T. Wilderotter, President & CEO

Shinya Yamanaka, Ph.D  (inventor of induced Pluripotent Stem cells)
Director, Center for iPS Cell Research and Applications
Kyoto University

Fanyi Zheng, Professor and Associate Director
Shanghai Stem Cell Institute, Jiao Tong University School of Medicine, China

Jerry Zucker (movie director, Ghost, Airplane, Naked Gun)
Zucker Productions, Founding board member, CURESNOW

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This is nothing governmental, folks, just something wonderful Roman and friends put together to try and help spinal cord injury research. Check it out, share with friends, come if you can.

Home roman reed about us news events donate Contact Us links home
stanford golf course
 
Limited Availability!
$5,000 Premium Foursome

- Overnight stay at the Half Moon Bay Ritz-Carlton
- Celebrity Golfer
- Cart and Green Fees
- Box Lunch and Catered Reception
- Tim Hockenberry Concert

 
$2,500 Standard Foursome

- Cart and Green Fees
- Box Lunch and Catered Dinner

 
Corporate Sponsorship – $500
Support spinal cord injury research for paralysis cure and sponsor a hole at the Roman Reed Golf Classic.

 
Can’t Make it to the Event?
Your contributions of any amount are greatly appreciated and directly support the Cause for Paralysis Cure!

The Roman Reed
2nd Annual Golf Classic
Monday May 23, 2011
Half Moon Bay Golf Course

Join 49er Greats, Cal Head Coach Tedford and Tim Hockenberry for a round of Golf to benefit Spinal Cord Injury Research for Paralysis Cure!

steve bono
Steve
Bono
jj stokes
JJ
Stokes
dave fiore
Dave
Fiore
joe staley
Joe
Staley
tim harris
Tim
Harris
adam snyder
Adam
Snyder
guy mcintyre
Guy
McIntyre
Mark Washington
Mark
Washington
dennis brown
Dennis
Brown
eric wright
Eric
Wright
A Performance By:
Tim Hockenberry
Special Thanks
to: Dave Fiore
Special Thanks to: Stu Gordon

Take A Stand,
So One Day-Everybody Can!
Thank You, Roman Reed

 

The majority of proceeds to benefit Stanford Partnership:
Spinal Cord Injury Repair (sp:scir)
Click Here for Event PDF (119kb)

For more information, please email us at info@romanreedfoundation.com
Visit the Half Moon Bay Golf Course website at www.halfmoonbaygolf.com

 

 

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 Pranav and the Court Decision: Anti-Stem Cell Lawsuit Still Threatens Sick
 
by Don C. Reed

“He is right here,” said Pranav’s mother, in her lilting Indian accent; “would you like to speak to him?”

For a moment I was actually afraid; I don’t know why.

Pranav had Spinal Muscular Atrophy (SMA) a disease like a slow spinal cord injury. Like the paralysis which afflicts my son Roman Reed, SMA is not “catching”, and in any case we were on the telephone.

“Hello,” said a surprisingly deep voice, very dignified. I had a sudden thought — he sounded like a politician, a good one, somebody who would use the power of government to help people.

We talked about Disneyland and Elmo, both of which he strongly approved.

But the conversation was tiring for him, and we soon said goodbye.

He was three years old.

During the next four years I learned a little bit about SMA.

“Similar to ALS/Lou Gehrig’s disease, but in babies, SMA eventually impacts every muscle in the body, hindering the ability to walk, sit, stand, eat, breathe, and swallow. SMA is degenerative. SMA is brutal,  the #1 genetic killer of young children. And as of today, SMA is terminal.”*

Pranav’s mother had given up her career as a Certified Public Accountant (CPA) to stay home to fight for her son’s life. When he had a cold, she would sit beside his bed, all night long, keeping him breathing.  She sent me a picture of him, a handsome little boy in a black-framed wheelchair, and I put it on the wall beside my computer, where I can see it every morning when I write.

Pranav was paralyzed; my son Roman Reed was paralyzed… from a college football accident instead of a disease, but still there were similarities, and what might cure one, might help the other.

Like this:

Spinal Muscular Atrophy. SMA, is a disease of the motor neuron, the cells which are located in our spinal cord…  If there is something wrong, if the motor neurons become sick or die, then the nerve no longer carries the … message to the muscles, and the muscle cells atrophy and die….

The motor neuron is a long nerve from waist to heel. What if stem cells could make new motor neurons to replace the ones lost by SMA?  This could be the answer to not only SMA, but also related conditions like spinal cord injury, ALS (Lou Gehrig’s disease) and others.

The same scientist, Hans Keirstead, who developed the embryonic stem cell research now in human trials for spinal cord injuries, is close to another FDA approved human trials, this time for the motor neurons to help fight SMA.

The Roman Reed Foundation did a fundraiser not long ago, “An Evening with Hans Keirstead”, specifically to raise funds for Keirstead’s motor nerve project, where he is trying to purify embryonic-derived stem cells called motor neurons — for both spinal cord injuries and for SMA.

It was my hope that Pranav could participate in those trials.
 
Four years had passed, since I first spoke to Pranav: four years of constant struggle, to raise funds for the research, and to protect scientific freedom so the scientists could do their work.

At every step, we faced the same political/ideological opposition. The Religious Right and their dominance over the Republican party are huge obstacles to cure.

One of many attacks was a major national lawsuit, Sherley v. Sebelius, an attempt to stop all federal funds for embryonic stem cell research.

This lawsuit threatened any child with a disease which embryonic stem cell research might help. If the money is cut off, the research stops. If embryonic stem cell research later is determined to have the answer to a disease, what will that mean to the children who died in the meantime?

The number one source of research funding in the world is America’s federal government, specifically the National Institutes of Health (NIH). If it becomes illegal for the NIH to fund embryonic stem cell research, that essentially kills our hopes for cure in that area.

A few days ago, an appeals court made a decision which allowed the funding of research to go forward, pending the outcome of the trial.

The patient advocate community was naturally overjoyed with the decision. But jubilation is premature, because the fight is not over. The court decision only blocks the ban on funding research during the trial…

Royce Lamberth, the same conservative Republican Bush-appointed judge who had the case before, still has it now. He opposes the research now as he did then, and I fully expect him to decide against us.

I hope I am wrong about him, of course, as I was about the three other conservative Republican judges on the appeals committee. I figured we had no chance.

All three were Republican appointees: one put there by Ronald Reagan, the others by the first and second President Bushes.

But two of three judges agreed that a stem cell is not an embryo, and therefore the Dickey-Wicker Amendment (which forbids destroying embryos) did not apply. Since, in their view, the case was not likely to succeed, they decided government funding of the research could continue during the trial.

But the case is very much alive. The plaintiffs will doubtless appeal all the way to the Supreme Court.

Who is suing? Although backed by powerful Religious Right organizations, only two people are technically doing the suing: adult stem cell researchers Theresa Deisher, and James Sherley.

Their background?

Dr. Sherley, an African-American, once sued his college (MIT) for not renewing his contract, and he charged the college with racism. He went on a hunger strike to dramatize his position.

Dr. Deisher (whose business, Ave Maria Enterprises, was recently blessed by her local bishop, who sprinkled her office with holy water) is well-known for her opinions–in addition to a seeming hatred for embryonic stem cells, she is also against vaccination for measles and other diseases, apparently believing that vaccines cause autism, despite overwhelming evidence to the contrary.

What are their grounds for suing? Self-interest, pure and simple. They claim they will be economically damaged, if the Federal government is allowed to fund embryonic stem cell research.

Both scientists want to be paid by the government to do adult stem cell research. They feel they would be unfairly hurt if any government dollars were spent on embryonic stem cell research, because that would mean less money for them.

On those grounds — their opposition to increased competition for grants–they are suing the American government. If they win, it will illegal for the NIH to fund embryonic stem cell research.

This is nonsense. If allowed, their argument would set precedent for any scientist to sue the government to block federal funding of any new research which competes with the old.

Can you imagine? One alternative to nuclear fission (what we have now) is nuclear fusion, which apparently can give us all the positive energy, but without the radiation.

According to the argument advanced by Sherley and Deisher, it would be illegal for the federal government to ever fund the clean kind of nuclear, because it would mean less money for researchers who liked the old dirty kind!

Four years had passed. Four years…

Although type one SMA typically kills its victims before the age of two, Pranav had survived to the age of seven, in my opinion due to the heroic efforts of his family.  

The Keirstead/Geron stem cell trials for paralysis are underway.

A young man named Timothy Atchinson received the world’s first embryonic stem cells in a human trial. That research, which Roman’s law funded–and which was opposed at every step by the Religious Right — was headlined in a story in the Washington Post: “Stem Cells were God’s will, says first recipient of treatment”.

The Act which paid for that research, the Roman Reed Spinal Cord Injury Research Act of 1999? Its funding was removed. Although the program itself was unanimously approved by both sides of the aisle, with every Republican and Democrat voting that it be continued, there was no money for it.

But what if we funded it by driving violations (car crash is a major cause of spinal cord injury) like seven other states did?

I approached Assemblyman Bob Wieckowski, Democrat of Fremont, and asked him to champion this new way to fund the law begun so many years ago by Assemblyman John Dutra.

Wieckowski just smiled, and said “Absolutely”, and has been fighting for it ever since.

If AB 190 prevails, a $3 fine will be added to bad driving tickets in California, which would bring in enough money (perhaps $11 million a year) to fund a serious spinal cord injury program.

The Religious Right came out against it. Why? Of the 191 projects the RR Act funded in our ten year history, 4 involved embryonic stem cells, and that was enough to get us attacked.

Naturally,I went through my stem cell phone book, emailing everybody I knew, asking their support.

 I wrote Pranav’s mother Kavitha twice, asking for a letter in support of AB 191. Always in the past, when I needed a letter written to fight for research, Kavitha was willing.

This time there was no answer.

I figured, she was either exhausted from the work of tending her son — or maybe just tired of hearing from me! The latter would be understandable. Sometimes I get sick of the sound of my own voice, endlessly exhorting people to do what they don’t want to do, interfering with their busy lives, asking them to do still more chores, to write yet another letter of support.

But I had to share our wonderful news… On April 26th, AB 190 passed our first committee hearing! The opposition showed up and talked against it, of course, and the two Republicans on the committee voted no, but still we still won: 4-2, with one abstention.

Roman spent virtually his entire speech talking about children affected by spinal cord maladies, and naturally he mentioned Pranav — I just had to tell his Mom.

Kavitha wrote back the following.

Thank you, hard day for us– one month since Pranav passed away. However. very glad that Roman mentioned Pranav and it had an impact.
I knew Pranav was getting weaker, he wanted to spend more time on the computer than going out. He was not sitting up so much. But he was so cheerful and happy.  
 
On March 23th he started coming down with a cold – just a minor one, we had seen this a million times, managed it at home. His numbers were ok – good O2, Heart rate was slightly high. Just did more Chest PT, lots of rest, more bipap (oxygen mask) time – nothing unusual.
 
Night came and he was not comfortable, asked to be turned many times. Again not unusual. Numbers were fine, so we were not concerned.
 
March 24th was better. Had school at home, did painting project as he was studying about DaVinci and Monet.
 
March 25th, he woke up in the morning and asked me to cancel school, unusual for him…. For some reason Dad wanted to stay at home, saying he would work from home that day.
 
I stayed with Pranav by his bedside and he told me he was tired. I told him to relax and go to sleep. His numbers were ok, so no big worry.
 
Suddenly at 12:03 he said,  “Mom, I can’t breathe”.  That was the last time he spoke. It happened in seconds. We did everything possible.  The EMT was there in 5 minutes.  He still had a pulse, so was taken to ER and flown to Children’s Hospital in Philadelphia. He had gone into a coma. They did everything, but there was no response.
 
We had to say goodbye on March 29th. His eyes, kidneys and tissue were donated. 
 
I cannot believe yet what happened.  He still lives here with us, I can feel his presence.
 
No child should be taken away so mercilessly by disease… He was so looking forward to do great things in life. He made me a better person, a better mom.
 
I wish I had just one more chance to make everything alright…

 
Kavitha and her husband are shining examples of all that parents can be. They gave everything, but the medical answers were just not there.Here is a note from parents of another child, Gwendolyn, who has SMA.

Please know that Pranav…was an inspiration… the way you all lived your lives with him and his passing only fuels our passion to end this cruel disease — for Pranav, for Gwendolyn, for those taken much too soon, for those who continue to fight for every single breath, for those whose parents will take them home from the hospital not knowing that they have a terminal disease called SMA. This is why we fight and we will not stop until SMA is no more. ~ Bill and Victoria Strong*, parents of Gwendolyn, age 3.

Pranav lived seven years, three months, and one day. He wanted to become President, and to walk on the moon (in the year 2035, his mom said, he always had a date for his goals). He got straight A’s in his home school. He had planned on making a movie starring Barack Obama. He reasoned that when he was old enough to make the movie, Obama would no longer need to be President and would have the time…

The dignified little voice is silent. But in a larger sense, for we who support research for cure, Pranav’s voice must never be stilled. Our struggle must and will go on. On its outcome depends the health and happiness of millions of children, all across the world, each with a right to live a full and happy life.

The opposition will continue to delay us. Their obstruction will be measured in the cost of lives and suffering: people who might have been cured. Those who use their powers to block research will win some battles along the way. At present, the Republican Party is unfortunately dominated by the anti-research Religious Right.

The victories of the anti-research few are like the victory of that miserable Bishop Pierre Cauchon in the middle ages, he who led the legal battle against Joan of Arc. He won the case. A fifteen year old girl was burned to death, and her ashes scattered in the Seine. Yet her name shines throughout the world, a symbol of faith and courage. And Cauchon? That word has the stench of an epithet.

The patients and their families will prevail. Already, a majority of Republicans are ahead of their political leadership, in full support of embryonic stem cell research. In time, mainstream Republicans will either migrate to a party which does support cure research, or (let us hope) they will change the Grand Old Party from within.

Everyone is affected by incurable disease. Already an estimated one hundred million Americans suffer chronic illness or injury. All of these people have families. The price of unending care for the chronically ill is so huge it is hard to grasp. Already, the medical bills of the incurably sick are so great they exceed the annual cost of the national debt, In 2009, the direct cost of chronic disease was $1.65 trillion, vs. $1.6 trillion for the national deficit in that same time. This is the reason health care costs for taxpayers are increasingly unpayable.

These are not statistics, but loved ones, our family members. They are our wives and husbands, our parents, our brothers, sisters, nieces, nephews — and our children.

Like a dignified little boy named Pranav.
 
*At six-months-old, Gwendolyn Strong was diagnosed with a genetic disease called spinal muscular atrophy or SMA… We started the Gwendolyn Strong Foundation, a nonprofit public charity, in 2009 to fight alongside her. In less than two years, we have raised over $800,000, and have provided targeted, strategic funding for promising research programs including:  Dr. Hans Keirstead’s stem cell-derived motor neuron transplantation therapy currently awaiting FDA approval to commence a Phase I safety study …–Bill and Victoria Strong.

For more information, please visit: GwendolynStrongFoundation.org 

Follow Don C. Reed on Twitter: www.twitter.com/diverdonreed

 

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