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Archive for March, 2011

Minnesota: stand up for stem cells!

Minnesota Advocacy Alert – Stem Cell Research at Risk!

   http://cirmresearch.blogspot.com/2011/03/legislating-science-without-scientists.html

Live in Minnesota? Come to the Capitol today, and stand up for stem cell research!

The Save Research, Save Lives event will be held:
Thursday, March 31
11:00-12:00
State Office Building (across the street from the Capitol) – Room 181

See below for more information on the legislation and the event:
The Bills:  SF 760 Health and Human Services Omnibus bill (https://www.revisor.mn.gov/bin/bldbill.php?bill=S0760.2.html&session=ls87
   section 25.145.4221) and SF 924 Omnibus higher education (https://www.revisor.mn.gov/bin/bldbill.php?bill=S0924.1.html&session=ls87
   section 10.145.4221)
SCNT research:  You can visit the Juvenile Diabetes Research Foundation’s Web site to learn more http://www.jdrf.org/index.cfm?page_id=101083
Use this link to learn about Parking at the Capital complex  http://www.admin.state.mn.us/pmd/4-2_public_parking.htm

Don’t let Minnesota lose the freedom to research.

Help the Juvenile Diabetes Research Foundation protect everyone’s hopes for freedom from chronic disease.

Now is not the time to eliminate ground breaking scientific research.

As you may be aware, Minnesota legislature is currently considering some of the most dangerous legislation we have seen designed to halt one key area of research.  The legislation seeks to criminalize and defund the research and the scientists doing it, which will lead to them leaving the state, taking resources, leadership and jobs. Scientists and doctors around the globe believe that stem cell research has life-saving and life-enhancing potential.  Progress in this area of research could cure diseases like type 1 diabetes, cancer, paralysis, and spinal cord injury, Alzheimer’s, Parkinson’s, and other devastating conditions.

Therapeutic Cloning is not REPRODUCTIVE CLONING.
  No one in this debate is in favor of reproductive cloning.

Therapeutic cloning, known as SCNT – somatic cell nuclear transplant, takes an unfertilized egg and adds DNA from a patient to create a stem cell line.  These stem cells can be used to replace damaged tissues or cells.  The cell line is compatible with the patient, making it potentially more effective and free of rejection risks.

We do not support reproductive cloning, which seeks to replicate an entire organism (like Dolly).  Therapeutic cloning and reproductive cloning are not identical. A law in Minnsota already addresses a ban on human reproductive cloning.  However, these bills seek to tie them together.

To help the legislature know the differences in these types of research and to save the practice of therapeutic SCNT research in Minnesota a press conference is being held to your chance to show support of scientific research and therapeutic cloning which is helping to find cures and treatments for disease.  We need your voice to help convey the importance of this research.

We look forward to seeing you.

Juvenile Diabetes Research Foundation International
JDRF MinnDakotas
3001 Metro Drive Suite 100
Bloomington, MN  55425
Phone: 952-851-0770
Fax: 952-851-0766
E-mail: minndakotas@jdrf.org
Website: http://www.jdrf.org/minndakotas

!

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http://www.huffingtonpost.com/don-c-reed/crashing-romans-van-disab_b_841645.html

Please share this widely as you
can—April 5th is the life-or-death hearing for AB 190, which will
fund the Roman Reed Spinal Cord Injury Research Act—or not.

Roman’s van crashed… read the
following from Huffington Post, please.

Don C. Reed

Sponsor, California’s Roman Reed Spinal Cord Injury Research Act of 1999

Crashing Roman’s Van: Disability Community Fights
On

Posted: 03/29/11 12:00 PM ET

 

Before his van crashed, Roman Reed was having a great day.

He was driving home after giving a speech at the University of California at Irvine, about
the new bill (Assembly Bill 190, Wieckowski, D-Fremont) to fund the Roman Reed
Spinal Cord Injury Research Act.

Some great scientists had endorsed the program: Paul Berg, winner of the Nobel Prize for his work with DNA; Shinya Yamanaka of Japan, inventor of Induced Pluripotent stem cells; Dalton Friedrich, who leads theworld-renowned Miami Project to cure paralysis; Zach Hall, former director of the National Institute of Neurological Disorders and Stroke (NINDS) and more.

If we can pass it, the bill will be a winner: costing the taxpayer absolutely nothing, it would be funded by a $3 fine for reckless driving.

Snow began falling when Roman reached the Los Angeles grapevine, and he slowed down.

But we did not want the research to slow down. The bill I thought of as “Roman’s law” was small, just $1.5 million a year, but it had always brought in far more money than it cost. For a total investment of $14.6 million over ten years, the successful research had attracted $63.8 million in additional money from the National Institutes of Health and other sources, new money for California.

But our little bit of funding had been removed.

The bill to continue the research, Assembly Bill 190, would be decided April 5th at Tom Ammiano’s Public Safety Committee in Sacramento…

The van hit a patch of black ice. Losing traction, it spun completely around, twice.

Roman was in the driver’s seat, having transferred from the 300 pound wheelchair behind him. The huge power chair now flipped like a toy — the van rammed into the guardrail with a terrific impact — one wheel bent the rail, hanging over the abyss.

Then silence, except for the tick…tick…tick… of the engine block, contracting as the metal cooled.

And  there my son stayed, until kindly truckers stopped in the snow.

Roman is 6’4″, 235 pounds, and for the past 16 years he has been paralyzed from the
shoulders down.

His wheelchair was broken in half. The tow-truck got the van to a nearby Wendy’s, where the manager was kind enough to let him leave it overnight, and Roman said goodbye to the truckers, and sat in a booth.

“Oh, hi, Dad,” he said on his cell, “I had a little accident….”

Fortunately, Gloria’s sister Leah was driving North not far from him, and she and husband
Steve immediately turned their car around and drove back onto the snowy
grapevine. They got Roman out, just before the road was closed down.

Roman’s van was raided in his absence, and his I-pad and laptop computer were stolen.

Welcome to the world of the paralyzed advocate

Why was it so important that Roman make such a long and difficult trip?

This is a time of crisis. Everything we have fought for these past sixteen years is on the line.

Selfishly, I want to see paralysis cured in this lifetime.

But what motivates Roman is larger than if he gets out of the wheelchair or not.

We are fighting for a better world.

When John F. Kennedy said, “We are going to the moon”, that united a
country — and from the space race sprang the computer revolution.

Biomedicineis just as game-changing. Last year, incurable disease cost America $1.65
trillion dollars–more than the entire national debt for the same amount of
time.

The inability to pay those colossal bills is dragging down the economy, here and
all across the world.

If we can cure paralysis, the very symbol of what cannot be cured, then we will have
proven that curing all chronic disease and disability may be within our reach.

Everything is coming together, if we can just pass this single bill.

If we can pass AB 190, we will (for the first time!) have serious money to focus
specifically on paralysis: roughly eleven million a year.

If there are stem cell components to the cure, researchers may be able to take their
small successes with our funding and use that preliminary data to qualify for a
larger California stem cell program grant.

Successes with either will make scientists eligible for add-on grants from the federal
government.

Scientists will begin start-up companies — working toward clinical trials…

And then at last, when an approach has proved itself to be practical and worthy, the big
bucks people — venture capitalists and giant corporations — will get involved.

Five steps

1. A scientist gets an idea.

2. An RR grant funds him/her in a small way.

3. The California stem cell program finds something it likes, and supports it with grants.

4. The NIH and other sources provide add-on grants.

5. A company takes it to clinical trials — and the giant corporations make itavailable

Is that not wonderful? Everybody wins: Republicans, Democrats, Greens, Independents–we
all know somebody who is seriously ill — and nobody likes paying taxes to
provide for the endless medical bills of the incurably ill.

AB 190 just has to pass.

When Roman got home, his 20 month old daughter, Katherine, looked at the dried blood on
his face and said: “Daddy hurt!” Then she ran for the box of baby
wipes and went to work on Daddy’s face, scrubbing the bloodspots vigorously on
his bruised lips. It had to have hurt a lot, but he kept smiling until she
nodded, satisfied her father was all better now.

Roman was lucky. No serious damage was done. His accident was caused by road
conditions.

But for many, reckless driving is the cause of paralysis. One drunk driver can ruin a
person’s physical life. Assembly Bill 190 recognizes that reality, and
penalizes those who put us all at risk.

If I had my way, every judge who administers the traffic fine would mention that $3 of
the penalty is going to try and cure spinal cord injury paralysis, of which
reckless driving is so often a cause.

As for Roman, he ‘s out of action for a while, right? Well, not exactly. My son is not
good at giving up.

After Katherine’s vigorous healing of his face, Roman went to work on Craig’s list,
locating a twelve-year-old van and a second-hand wheelchair. A home loan was
arranged; modifications were begun.

Yesterday we drove him to San Francisco for a
meeting (he would not let us stay there for it) after which he took BART home.

A couple hours from now as this is written, we will drive Roman to the repair yard to
get the new/old van. All we need now is two batteries ($300 each) for the
electric chair, and in the words of Willie Nelson, Roman will be “On the
road again…”

P.S. AB 190, the non-tax method of funding spinal cord injury research for cure, will be
decided April 5th, at the California Assembly Public Safety Committee, chaired
by Tom Ammiano (D-San Francisco). You are welcome to join Roman and other
wheelchair warrior friends at the historic vote.

If you want to do something to help pass the bill, just cut and paste the following
into your browser.

http://lcmspubcontact.lc.ca.gov/PublicLCMS/ContactPopup.php?district=AD13&

It will take you to Committee Chairman Tom Ammiano’s contact box.

Just say you support AB 190, because it is a reasonable way to fund paralysis cure.

But do it now, please, we are almost out of time.

 

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

 

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Fremont Argus My Word: Traffic tickets — to cure paralysis?

By Don C. Reed
Guest commentary

Posted: 03/23/2011 04:00:00 PM PDT

Updated: 03/24/2011 10:31:31 AM PDT

ASSEMBLY BILL 190, introduced by Assemblyman Bob Wieckowski, D-Fremont, would tack a $3 fine onto every reckless driving ticket in California — the money to go into the Roman Reed Spinal Cord Injury Research Act.

Although small ($1.5 million a year), the Roman Reed Act has been great for California. Even judged by financial terms alone it was profitable. Over 10 years, its investment of $14.6 million in research dollars attracted an additional $63.8 million to California from the National Institutes of Health and other outside sources: New money and jobs.

We have had tremendous successes, from the famous paralyzed rats that walked again (featured on CBS’ “60 Minutes”) to 175 published scientific papers, to new methods of rehabilitative exercise, as well as efforts to ease bone loss and chronic pain, restore bowel and bladder control, and much more.

Times being what they are, legislators last year reluctantly removed the small amount of public funding ($1.5 million a year) it took to run “Roman’s Law.”

Privately, legislators in both parties told us to keep fighting, find a way to keep the program alive. They know what a cure could mean to California’s 500,000 paralyzed residents. Financial costs alone are staggering: A spinal cord injury means medical bills around $775,000 in the first year alone. Since few people have that kind of money, they turn to the government for help through Medi-Cal and Medicare.

Beloved by both Republican and Democratic legislators, “Roman’s Law” was twice renewed by near-unanimous votes of the Assembly and Senate.

Don’t let the program die, the legislators said.

So, we found a way. It wasn’t original, but we borrowed from the examples of seven states — Florida, Kentucky, Illinois, Missouri, New Jersey, New York and South Carolina — all of whom fund spinal cord injury research with traffic violations.

We are asking only $3, and nothing from safe drivers at all.

A vote of epic proportions will be taken April 5 at the Public Safety Committee in Sacramento. A yes vote means the dreams of millions of paralyzed Americans have a chance to come true in our lifetime. A no vote may delay cure for generations.

The vote will be difficult. Some in the committee have expressed concern about funding new laws by fines, which is a legitimate concern.

But reckless driving causes paralysis; roughly 46 percent of all spinal cord injuries are caused by car crashes.

Polluters are charged fines to clean up toxic wastes they leave; tobacco corporations must pay to make up for damage done. Why should reckless drivers not pay just a little bit — to fix a problem that they cause?

Fremont resident Don C. Reed is the citizen-sponsor of the Roman Reed Spinal Cord Injury Research Act. He and his son Roman Reed, paralyzed in a 1994 college football accident and who was the inspiration for the California law, are dedicated to the cure of paralysis and other forms of chronic disease and disability.

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Should California NOT Fund Paralysis Cure?  Decision Day, April 5th 

By Don C. Reed

A $3 fine tacked onto every reckless driving ticket in California would mean $11,000,000 a year for spinal cord injury research for cure—IF Assembly Bill 190 (Wieckowski, D-Fremont) passes the Public Safety Committee hearing in Sacramento, April 5th.

If AB 190 passes, money will be put into the Roman Reed Spinal Cord Injury Research Program. It is everything or nothing. If AB 190 is voted down, so is the research.

Reckless driving is a direct and major cause of paralysis, with roughly 46% of all spinal cord injuries caused by car crash.

Do other states have similar programs? YES! According to the National Academies of Science, the following seven states funded spinal cord injury research programs via traffic ticket add-on, or surcharge for driving under the influence (DUI):

1.      Florida (DUI charges);

2.      Illinois (traffic ticket surcharges);

3.      Kentucky (traffic violation surcharge);

4.      Missouri (traffic surcharges);

5.      New Jersey ($1 surcharge on traffic or motor vehicle fines);

6.      New York (traffic ticket surcharges);

7.      South Carolina (a $100 surcharge on fines for DUI).

–“Spinal Cord Injury: Progress, Promise, and Priorities: http://nap.edu/catalog/11253.html Copyright (c) National Academy of Sciences.

It is almost seventeen years since Roman Reed broke his neck playing college football: September 10th, 1994. In an instant, he was paralyzed from the shoulders down. When people ask how he is doing, I always answer: every day is Hell, because it is.  Roman never complains, but I am his father, and I see what he goes through.

The Roman Reed program (see bottom of page for brief description) is a chance to defeat paralysis. I am not prepared to sit back and watch it die.

If you agree, then help me now.

Below is the 7-person committee which will decide our fate. Please call or email them TODAY: if you only write one letter, make it to the chair, he has the most power.

Short letters are best: just say you support Assembly Bill 190 (Weickowski, D-Fremont), because reckless driving is a major cause of spinal cord injury, and violators should pay a small fee to support cure research. 

Tom Ammiano – Chair Dem-13 (916) 319-2013 Assemblymember.Ammiano@asm.ca.gov
Steve Knight – Vice Chair Rep-36 (916) 319-2036 Assemblymember.Knight@assembly.ca.gov
Gilbert Cedillo Dem-45 (916) 319-2045 Assemblymember.Cedillo@assembly.ca.gov
Curt Hagman Rep-60 (916) 319-2060 Assemblymember.Hagman@assembly.ca.gov
Jerry Hill Dem-19 (916) 319-2019 Assemblymember.Hill@assembly.ca.gov
Holly J. Mitchell Dem-47 (916) 319-2047 Assemblymember.Mitchell@assembly.ca.gov
Nancy Skinner Dem-14 (916) 319-2014 Assemblymember.Skinner@assembly.ca.gov

 Please send a copy of your email to: Ryan.Spencer@asm.ca.gov.

Finally, here is a brief description of the program we are trying to save.

The Roman Reed Spinal Cord Injury Research Act: AB750/AB1794/AB190

Since its inception in 2000, the Roman Reed Program has provided $14.6 million for spinal cord injury research in California. This seed funding attracted add-on grants and other additional funding of $63,867,216 from the National Institutes of Health and other out-of-state sources, creating new jobs. It was twice renewed by near-unanimous votes of the Assembly and Senate.

Spinal cord injury causes a significant drain on state resources: an estimated five million six hundred thousand Americans suffer some form of paralysis, and 1,275,000 live with a catastrophic spinal cord injury. Financial costs are devastating.  Medical costs during the first year after a spinal cord injury are approximately $775,000, and as much as three million dollars over the life of a quadriplegic, which exhausts insurance caps.  Consequently, almost all people with a spinal cord injury end up on Medical and Medicare.  Improving function and health of people with SCI will reduce this financial burden to the state.

The Program is administered by the University of California system and is directed by Oswald Steward at the Reeve-Irvine Research Center at UC Irvine.  The Program provides small grants (seed funding) for California scientists and supports a core laboratory for spinal cord injury research at the Reeve-Irvine Research Center.

1) Research grants are determined by a panel of out-of-state experts to preclude conflicts of interest. Of a total 289 applications, 129 were awarded grants totaling $11,795,292. Additionally, 68 fellowships were awarded to graduate students working on spinal cord injury for an aggregate cost of $1,607,487. These grants achieved efficient leveraging, resulting in 71 new grants  from NIH and other sources, with a total $63,867,216 in new funding brought into California.

2) The Roman Reed Core Laboratory, a 6,000 square foot lab at UC Irvine, provides state of the art equipment, animal facilities, and trained personnel: where new scientists can learn, and established experts can work .The lab was dedicated on March 1, 2002, in a ceremony marked in the United States Congressional Record. The lab has hosted both individual projects (24) and collaborative efforts (18) as a central hub of spinal cord injury/nerve repair research.

Targets of funded research: develop neuroprotective interventions to reduce the wave of secondary that occurs in the hours and days following a spinal cord injury; restore bowel and bladder control; reduce chronic pain;  restore sexual function; prevent life-threatening blood pressure irregularities;  restore  myelin insulation around damaged nerves; prevent  formation of the spinal scar, which blocks nerve messages between brain and body; replace missing nerve cells;  implant bio-engineered frameworks to bridge the gap in the damaged spine; develop neurotrophins (nerve fertilizer) and other interventions to promote nerve re-growth; reduce bone-loss; test FDA-approved medications which may have an SCI application, and develop new activity-based therapies to improve function and overall health.

Results: 175 peer-reviewed publications.  Research on activity-based therapies led to new therapies which are a sea change for people with chronic spinal cord injury.  These exercise-based therapies improve quality of life, reduce secondary health complications, and save the state money due to reduced health care costs.  Other discoveries supported by the program are in the pipeline toward translation including:  1) the world’s first clinical trial for stem cells for spinal cord injury; 2) a treatment initially developed for spinal cord injury is in clinical trials for inflammatory bowel disease; 3) new surgical techniques have been developed to treat people with nerve injuries.  

Please. Write one e-mail today. It could be the one that helps a lawmaker decide—and gives us the crucial vote to let the research go forward.

As Roman Reed always says: “Take a stand with us. Take a stand—so one day, everybody can.”

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 “ROMAN’S LAW” FIRST COMMITTEE HEARING SCHEDULED—March 22

If you are one of America’s five million people who suffer paralysis, you need to support California’s Assembly Bill 190 (Wieckowski, D-Fremont), to put funding back into the Roman Reed Spinal Cord Injury Research Act, named after my paralyzed son, Roman Reed.

Want to help? Simple. Send a one-sentence email, saying “I support AB 190”  to: Assemblymember.Wieckowski@assembly.ca.gov, cc Jalene.Molina@asm.ca.gov. *

 “Roman’s law” is administered by the University of California, and brings new money into our state. Over ten years, the law spent $14 million—and attracted $64 million in additional grants. A tremendous success, the act was renewed by unanimous vote of the Assembly and Senate. Unfortunately, due to the budget crisis, our funding was removed—now we can put it back.

AB 190 won’t cost you a nickel: unless you are a reckless driver. Car crash causes spinal cord injuries; therefore, AB 190 is funded exclusively by a small fine (3 dollars) for bad driving.

For more information, read my article in the Huffington Post: http://www.huffingtonpost.com/don-c-reed/in-a-perfect-world-a-law-_b_817322.html. Or, write me at: stemcellbattles@aol.com.

IMPORTANT: send your email right now; the bill’s first committee hearing is March 22.

Thank you!   

Don C. Reed

*Hard-copy LETTERS OF SUPPORT can still be sent to: Assemblyman Bob Wieckowski, State Capitol, P.O. Box 942849, Sacramento, CA 94249-0020.  FAXes can be sent to: 916-319-2120

Want to do more? Send a copy of your email to each committee member.

Tom Ammiano – Chair Dem-13 (916) 319-2013 Assemblymember.Ammiano@assembly.ca.gov
Steve Knight – Vice Chair Rep-36 (916) 319-2036 Assemblymember.Knight@assembly.ca.gov
Gilbert Cedillo Dem-45 (916) 319-2045 Assemblymember.Cedillo@assembly.ca.gov
Curt Hagman Rep-60 (916) 319-2060 Assemblymember.Hagman@assembly.ca.gov
Jerry Hill Dem-19 (916) 319-2019 Assemblymember.Hill@assembly.ca.gov
Holly J. Mitchell Dem-47 (916) 319-2047 Assemblymember.Mitchell@assembly.ca.gov
Nancy Skinner Dem-14 (916) 319-2014 Assemblymember.Skinner@assembly.ca.gov

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