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Archive for February, 2010

Renew Roman’s Law?

ROMAN REED SPINAL CORD INJURY RESEARCH ACT RENEWAL–???

by Don C. Reed

Hi!

 Would you help me with a letter?

The California State Roman Reed Spinal Cord Injury Research Act (named after my paralyzed son) is up for renewal this year.

We have done wonderfully well. In addition to 175 published scientific papers, two patents pending, and several major scientific breakthroughs, we also brought new money to California.  Our ten-year total funding of $14 million was enhanced by an additional $60 million from out of state donations and matching grants—new jobs and revenue for California.

But you know how tough the situation is in Sacramento!  The last time our law was up for renewal, we received virtually unanimous approval—a yes vote from every Assemblymember and Senator except one!

This year, because of the financial thunderstorms, the votes will be very close, and could go either way.

I wish everyone in California could have been with us on opening day of the Roman Reed Lab. Paralyzed Superman Christopher Reeve called to congratulate us. What a joy it was to hear that sweet familiar voice, halting, and yet so strong– my wife Gloria got so excited she photographed the telephone.

That day I held in my hand a rat which had been paralyzed, but which now walked again—and this while my paralyzed son watched from his wheel chair…  

The program is beautiful; we don’t want to lose it.

Senator Alberto Torrico is leading the charge: he will face the budget battles, but we must not let him fight empty-handed. He needs letters of support from Californians, and also from affected individuals and groups from everywhere—paralysis knows no boundaries.

I ask your help. Please write a short letter, send it by ground mail, and email me a copy.

Group endorsements are wonderful, but they take time. If you cannot get approval through the group’s process in time, consider a positive alternative.

If you are a member of a group, you can list your position in it, for purposes of identification: that does not commit your group.

Here is a sample letter, use all or some of it, if you like, or write your own completely.  Even one short sentence of support would be a help.

Something as uncomplicated as “My family supports AB 1931, the renewal of the Roman Reed Spinal Cord Injury Research Act” will have impact—but only if it is received.

Please write something, and do it soon, please: the voting begins mid-March. Ground mail letters must go out as soon as possible.

Assembly Majority Leader Alberto Torrico

P.O.Box 94289

Sacramento, CA 94249-0020

CC: diverdonreed@pacbell.net, and ryan.spencer@asm.ca.gov.

Re: support for AB 1931 (Torrico) Roman Reed Spinal Cord Injury Research Act

Dear Majority Leader Torrico:

We support AB 1931, the renewal bill for the Roman Reed Spinal Cord Injury Research Act.   

In the ten years of its existence, “Roman’s Law” has spent $14 million dollars on research to try and cure paralysis—and it brought $60 million dollars in new money for California, with another $7 million pending—both progress and profit.

Scientists helped by Roman Reed research grants have generated 175 published scientific papers, a major contribution to the field.  The Roman Reed Lab has helped new scientists get started, and assisted veterans with new approaches, from a way to re-insulate damaged nerves (which may help other neurological conditions such as spinal muscular atrophy, a disease which kills children, often before the age of two) to a new variation of the Petri dish, unchanged for decades, updating to cheaply sort cells. Laboratory rats so badly paralyzed they could only drag themselves before, are scampering now, thanks to this research. It must go forward.

Paralysis affects roughly 464,000 Californians, at a cost of about $1.5 billion dollars a year. The suffering endured by paralyzed people and their families cannot be counted.

This bill is small, (just $1.5 million a year, ironically, that figure is one one-thousandth the cost of the problem) but mighty: it helps California, and the world; it deserves unanimous support.

We stand with Roman Reed, who said: “Take a stand for research for cure—take a stand, so one day, everybody can.”

Thank you,

Your name

If you want to put more—or just a single sentence of support, that’s fine.

 If your group can send a support letter, that’s wonderful!

But any help is better than no help. We need lots of letters.

Feel free to contact me if you need help with the letter language.

Best,

Don

(Below is a press release from Majority Leader Torrico, and AB 1931 information.) 

FOR IMMEDIATE RELEASE CONTACT: Jeff Barbosa

February 17, 2010 916-319-2723

TORRICO BILL WILL EXTEND FUNDING

FOR INNOVATIVE SPINAL CORD INJURY RESEARCH

Named after a Chabot College football player injured during a game, the Roman Reed Program supports scientific research in neural regeneration.

Sacramento – Assembly Majority Leader Alberto Torrico (D-Fremont) introduced legislation to extend funding for research into spinal cord injuries. Funding for the Roman Reed Spinal Cord Injury Research Act is due to expire next January.

Torrico’s AB 1931 will extend funding for an additional five years.

“About 646,000 Californians live with paralysis from various neurological conditions and the Roman Reed program funds critical research throughout the state that could improve their quality of life and their ability to achieve everyday tasks,” Torrico said. “Leveraging the $13.9 million in state funds allocated so far, researchers have brought in about $60 million in additional grants from the National Institutes of Health and other sources to enhance our knowledge and understanding of spinal cord injuries.”

The program is named after Roman Reed, a former Chabot College football player who suffered crushed vertebrae during a game. Reed became an advocate for spinal cord injury research and in 2000 the Roman Reed Spinal Cord Injury Research Act was signed into law and later renewed in 2005.

The research funds are allocated to the University of California and administered by the Reeve-Irvine Research Center at the University of California, Irvine. To date, more than 300 Californians have participated in 120 research projects. Each year, scientists in the spinal cord injury research arena gather at a “Meet the Scientists” forum sponsored by the program to discuss the best methods to collaborate on creative spinal cord research.

“By extending the funding for an additional five years, the bill will help continue what California began in 2000,” Reed said. “This research will make an enormous contribution to those of us suffering from spinal cord injury paralysis.”

Research partially funded by the program, conducted by the University of California, San Francisco, University of California, San Diego and UCLA, among others, has studied how the nervous system can use new pathways to issue commands to move; how drugs that block the body’s immune response to the initial trauma could increase the chance of recovery from spinal cord injuries; and when some of the research could find its way to human clinical trials.

###

Roman Reed Spinal Cord Injury Program Fact Sheet

Problem

California is home to approximately 646,000 people living with paralysis from various neurologic conditions.[1][1]  Nationwide, someone suffers a traumatic spinal cord injury every 41 minutes (based on an estimated annual incidence of 40 new injuries per million population[2][2]) leading to a significant loss of earning potential and high medical costs associated with their disability.  Furthermore, a recent national study estimates that 1.3 million Americans live with paralysis due to spinal cord injuries1, which is close to 5 times higher than previously reported statistics.  Given this increasing number of paralyzed people, rising health care costs with caregiver needs and loss of income potential, the total cost to the State of California approaches $ 1.5 billion per year.  Promising research-driven therapies could greatly improve the quality of life and functional capacity of SCI individuals, thereby lessening this tremendous financial burden to the State.

History:

The Roman Reed Bill was signed in September 2000, and was renewed in 2005, through AB1794, which was signed by Governor Schwarzenegger in September 2004.  Over its 9-year history, the fund has provided approximately $1.5 million per year for spinal cord injury research in the State of California. The Roman Reed Research funds are allocated to the University of California (UC), and the UC Office of the President allocates the Reeve-Irvine Research Center at the UC, Irvine to administer the funds.

Roman Reed Program

A portion of the Roman Reed funds support the Roman Reed Core Laboratory, allowing for the rapid translation of ideas into research, by making it possible for any scientist with a novel idea to immediately undertake experiments in well-developed animal models. The second portion is used to launch unique, creative, research projects by scientists throughout the state of California. The program provides seed funds for highly innovative projects that are stepping stones for new federal and other funding.

Roman Reed Research Awards:

Between 2000 and 2009 over 300 Californians have participated in 120 Roman Reed Research projects.  During that time, 64 graduate students have been supported as Roman Reed Fellows.

Public Outreach:

Over 1000 people have participated in Roman Reed sponsored public events over the past 9 years.  The goal of the annual “Meet the Scientists” Forum is to bring the spinal cord injured community into the research arena.

Leverage:

The total amount of Roman Reed funding from the program’s beginning in 2000 through 2009 is $13,880,100.  These funds have been leveraged into $59,969,394 in new funds being brought into the state through federal and other grant sources; an additional $7,351,391 is pending.


 


[1][1] Christopher and Dana Reeve Foundation, 2009

[2][2] National Spinal Cord Injury Statistical Center, 2009

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RUSH  LIMBAUGH, AND THE CALIFORNIA STEM CELL PROGRAM

By Don C. Reed

Rush Limbaugh has some ugly things to say about the California Institute of Regenerative Medicine (CIRM), which he regards as “nothing”.

To me, the CIRM is the greatest advance in the history of world medicine.

We’ll get to both opinions in a moment.

But first, Mr. Limbaugh’s view on embryonic stem cell research. 

He says these stem cells come from abortions.

“… using embryonic stem cells…I’m telling you, and I have from the get-go, who is behind this—is the—the militant pro-abortion crowd, because you need abortions to get these…” Rush Limbaugh, July 19, 2006 (emphasis added).

http://mediamatters.org/research/200607200011

This is, of course, nonsense. Without a pregnancy, (and there are none in embryonic stem cell research) how can there be an abortion?

This is not rocket science. Most people are clear on the birds-and-bees basics.

To make a baby, the sperm and egg unite, forming an embryo inside the mother’s womb. Without that nurturing shelter, it is biologically impossible to make a child.

In embryonic stem cell research, there is no implantation in the womb, no womb, no pregnancy— no baby—so how can there possibly be an abortion?

Mr. Limbaugh also had comments to make about champion stem cell research advocate Michael J. Fox, a Parkinson’s disease sufferer:

“He is exaggerating the effects of the disease…He’s moving all around and shaking and it’s purely an act…This is really shameless of Michael J. Fox.”—“Rush Limbaugh On the Offensive Against Ad With Michael J. Fox”, David Montgomery, Washington Post, October 25, 2006.

One of my Parkinson’s friends described the condition as like being slowly buried alive. The body’s coordination is gradually taken away, so you get worse, not better. Sometimes the body shakes, sometimes it freezes into immobility. Parkinson’s patients may lose the ability to speak, and finally, to breathe.

 “Shameless”? Indeed.

Now, Mr. Limbaugh’s thoughts on the California stem cell program, formerly the initiative Proposition 71. (He begins by citing an editorial, to be found at: http://www.investors.com/NewsAndAnalysis/ArticlePrint.aspx?id=517870

 “Five years after a budget-busting $3 billion dollars was allocated to embryonic stem cell research, there have been no cures, no therapies, and little progress… backers of Prop 71 are admitting failure… This is from an Investor’s Business Day editorial…This is what happens when you make science a political issue. You end up with fraudulent, fake, politically-oriented causes that have nothing to do with science, and everything about it ends up being a lie. Nothing. $3 billion, no cures, no therapies, no progress….”

http://www.rushlimbaugh.com/home/daily/site_011310/content/01125112.guest.html

Rush Limbaugh website, January 13, 2010

What a gush of misinformation. 

He does not even take the trouble to get his numbers right. California has allocated $1 billion so far, not three. This is a long program, and the money will be allocated gradually over the course of about fourteen years, or longer.  (Decisions on selling bonds to fund the program are made by a committee: the State Treasurer, the controller, the director of finance, the chair of the California stem cell program’s board of directors and two members appointed by the chair.)

The “five years” of the program? He is half-right. The program began five years ago—but lawsuits from the religious right and anti-tax advocates denied voter-mandated funding for more than two years. He is condemning an effort which has barely begun. 

In his eagerness to attack government funding of medical research, Limbaugh ignores the careful step by step progress the California Institute for Regenerative Medicine (CIRM) has made—almost entirely during the Presidency of an opponent of the research. 

Small (only 46 employees) but unstoppable, in its thirty months of funded existence, the CIRM has initiated educational programs, hired scientists, begun the construction of laboratories, generated 400 scientific papers,  reached out to the new industry of biomedicine, and developed a team approach toward the alleviation of suffering.

We– for this is California’s program, and America’s– we are using embryonic stem cell research (escr) as a primary weapon in this fight. No less than four chronic diseases have been targeted with the escr approach. We will choose the best form of regenerative medicine ethically and legally available, whether adult, embryonic, somatic cell nuclear transfer (SCNT, sometimes called therapeutic cloning, but for cells, never to make babies, which is illegal by the terms of Prop 71) or various forms of skin cell reprogramming, the new induced Pluripotent Stem (iPS) cells—we support full stem cell research, chosen for its value as the best science for the job, not for political ideology.  

We are fighting for people: like my paralyzed son Roman Reed, and 32 million Americans with a serious disability*; like my sister Barbara who has cancer, one of 100 million citizens with chronic disease**. These are not statistics. They are our loved ones, and politics must not block research which might heal or alleviate their suffering.

*(According to the U.S. Census, roughly one in ten Americans (32.5 million) lives with a continuing and severe disability.—U.S. Census Bureau, “Facts for Features”. Americans with Disabilities Act.  http://www.census.gov/PressRelease/www/releases/archives/facts_for_features_special_editions/010102.html)

**(Estimates of the numbers of Americans with chronic illness run as high as 109 million, as per the Milken Institute: “An Unhealthy America: the Economic Burden of Chronic Disease”, Ross DeVol et al, October 2007.)

http://www.milkeninstitute.org/publications/publications.taf?function=detail&ID=38801018&cat=ResRep

As a conservative, Mr. Limbaugh is undoubtedly (and rightly) concerned with the federal deficit.

Here is one statistic that should interest him.

Last year, chronic disease cost America $1.65 trillion dollarsroughly equivalent to the year’s entire federal deficit.

–“U.S. Spending on Chronic Disease Now Equal to Nation’s Annual Federal Deficit.” Partnership to Fight Chronic Disease, Washington DC, August 26, 2009.

(http://www.fightchronicdisease.org/media/statements/pfcd/ChronicDiseaseSpendingEqualsNationalDeficit.cfm)

Chronic disease and disability: that is what our feisty little state agency is up against: medical maladies considered incurable since the dawn of humankind.

At stake are millions of lives, and the financial well-being of our nation.  

The California stem cell program is taking on this gigantic challenge.

And the world will benefit.

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Protect What New York Won!

FIGHT TO KEEP WHAT NEW YORK WON!

by Don C. Reed

Paul Richter is a hero to me.

Shot three times in the line of duty, Trooper Paul was temporarily paralyzed. He was lucky, he says, regaining full motion (though he still has a lot of nerve pain.)

But instead of just thinking about himself, Paul managed to persuade every Democrat and Republican in the New York legislature to pass a spinal cord injury research act—and he did it almost without a single tax dollar!

“Uncle Paul’s Law” is funded almost entirely by a traffic ticket add-on. Since car crash is the number one cause of spinal cord injury, it makes sense that those who endanger their own and other people’s lives should help pay. (In California, I was inspired by the New York effort to propose the Roman Reed Spinal Cord Injury Research Act.)

A great law—already helping not only New York, but every paralysis-suffering person in the world.

I believe that one day my paralyzed son Roman Reed will fulfill Christopher Reeve’s prediction to “that Roman and I will stand up from our wheelchairs and walk away from them forever”.  Cure did not come in time for our great champion, but I still believe in his great dream.

When that happens, New York will have been part of that tremendous effort—if we act now, to prevent bureaucratic short-sightedness from killing it. The only expense is a very nominal administration cost—other than that, it costs New York nothing—and it might mean a great deal to people suffering the agonies of paralysis.

Read a note from Dr. Sally Temple, and then send one e-mail to the two government officials below—please?

It need not be long. Even a single sentence: “I support the New York Spinal Cord Injury research law” is helpful. Remember,

ANY HELP IS BETTER THAN NO HELP.

But time is short, so please act right now, and send a short note to these two gentlemen….

Senator Carl Kruger

kruger@senate.state.ny.us

Assemblyman Herman D Farrell, Jr.

farrelh@assembly.state.ny.us

Thanks so much,

Don C. Reed

P.S. Below is more info from Dr. Sally Temple.

 
Governor David Paterson has recently proposed terminating the Spinal Cord Injury Research Program (SCIRP) administered by the NYS Department of Health in his Executive Budget proposal. (Chapter 338, Laws of 1998).
 
Here is the document showing the proposed cut:  Click here: NYS DOB: 2010-11 Executive Budget Briefing Book – Health Care  Third bullet up from bottom of page.
 
We need all people who are impacted by spinal cord injury to write letters to protest this. The letters should go to their local NYS senators (if NYS residents) and to:
 
 
Senator Carl Kruger
Chair, NYS Senate Finance Committee
913 Legislative Office Building
Albany, NY 12247
 
and to
 
Assemblyman Herman D. Farrell, Jr.
Chair, Ways and Means Committee
923 Legislative Office Building
Albany, NY 12248
 
Regular letters are probably best, but email is fine tookruger@senate.state.ny.us or farrelh@assembly.state.ny.us
 
 
This medical research program was created thanks to the amazing efforts of Paul A. Richter a NY state trooper who fought valiantly to initiate the program motivated after he was shot three times and left paralyzed by a would-be gun trafficker in Lake Placid on September 30, 1973. The research program was also strongly supported by Christopher Reeve, and by many patients, families, advocates and researchers in NYS.
 
SCIRP is funded using money from surcharges imposed on motorists that are convicted of moving traffic violations not by tax dollars. Hence it only has admin impact on NYS. Most of the devastating spinal cord injuries are from motor vehicle accidents.
 
The NYS SCIRP has successfully grown spinal cord injury research in NYS and beyond. Over the past 10 years it has distributed 54 million dollars, funding basic research, but most importantly translational research to find new therapies that are most likely to help spinal cord injured patients. The program encourages scientists who had not been in the field to enter, and to collaborate with researchers from other disciplines towards creative solutions. Even though our lab had no history in SCI work, we received a grant that has helped us get into the field and produced some highly promising findings that we are moving towards a novel SCI therapy. Many other labs received funding and were highly productive (eg Ravi Kane, Deanna Thompson, Bob Linhardt at RPI; Mark Noble and Steve Goldman, U Rochester; Raj Ratan the Burke Rehab Institute in white plains). The program has led to multiple patents that are being developed, and new hope for SCI treatments.
 
The program was gaining recognition nationwide, and a recent meeting held in NYC at the academy of sciences building, next to ground zero, attracted the premier spinal cord researchers in the country. 
 
Losing this program will have an economic impact: it is a high tech job magnet – local institutes in NYS are now able to attract excellent spinal cord researchers from other states who want to move here to take advantage of the NYS funding opportunity. RPI just interviewed a young researcher in this area, and so did we. Each principle investigator who comes here will typically develop a lab of six people, provide jobs for local technicians and bring other researchers into the state.  This in turn leads to industry partnerships – the SCIRP fits with Gov Paterson’s recent initiative – Diversifying the New York State Economy through Industry-Higher Education Partnerships. http://www.ny.gov/governor/reports/pdf/IHETF_Report_FINAL.pdf
 
 Work in spinal cord research can have additional benefits in finding drugs for other nervous system disorders. Look at the recent success this week of Acorda Therapeutics, headed by Ron Cohen, a company founded to cure spinal cord injury now has FDA approval for Ampyra, estimated to be a billion a year drug for multiple sclerosis treatments – this is a NYS based company, headquartered at 15 Skyline Drive Hawthorne, NY 10532  Phone: 914-347-4300.
News on Ampyra: http://www.reuters.com/article/idUSN2216578120100122?type=marketsNews
 
 
If there is anything you can do to save this valuable research program, the high tech jobs and local industry it can create, and hope for new treatments for spinal cord injured patients, please will you help.
 
All best,
 
Sally
 
 
Sally Temple
Scientific Director
New York Neural Stem Cell Institute
One Discovery Drive
Rensselaer NY 12144
USA
 
phone: 518 694 8188;
fax: 518 694 8187
 
New York Neural Stem Cell Institute, non-profit for CNS research
 
 
 
 

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