TWENTY WORDS TO DEFEAT PARALYSIS? By Don C. Reed If

 TWENTY WORDS TO DEFEAT PARALYSIS?

 

By Don C. Reed

 

If a 20-word letter might rescue five million people from paralysis— would you write it?

 

If your answer was yes, then help me now.

 

First, America has more than five and half million children and adults suffering from paralysis.  To verify this, cut and paste the following into your browser bar:

 

http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.5900347/k.3B2/PARALYSIS_SURVEY_ALMOST_6_Million_affected.htm

How do we fight that?

Pass California’s Assembly Bill 714 (Wieckowski, D-Fremont) and get that research moving again.

AB 714 would restore $2 million a year into paralysis cure research, a California program called the Roman Reed Spinal Cord Injury Research Act of 1999, named after my paralyzed son. “Roman’s law” did a great job for ten years, unanimously approved by the Assembly, Senate, and Governors Gray Davis and Arnold Schwarzenegger– and then, in 2010, its funding was removed.   http://www.stemcellbattles.com/

Assembly Bill 714 would put that money back. (for non-partisan analysis, see: http://www.leginfo.ca.gov/pub/13-14/bill/asm/ab_0701-0750/ab_714_cfa_20130412_170728_asm_comm.html)

No matter where you live, if you want to see paralysis cured in our lifetime, here is something small but powerful you can do to help.

Write a one-sentence action letter. You can write more if you want, of course, but all we really need is a short note, ideally a FAX to: (916) 319-2143. 

Here is the letter.

“Dear Chairman Gatto: please support Assembly Bill 714 (Wieckowski, D-Fremont), restoring funding to the Roman Reed Spinal Cord Injury Research Act.”

Signed,

Your Name

Or, send the same message by email to: Assemblymember.Gatto@assembly.ca.gov 

The California Assembly Appropriations Committee will decide if AB 714 goes forward or dies. Chairman Mike Gatto will dominate the decision.  

Would you like him to say yes to paralysis cure?  Send him a FAX or e-mail.

But you are too busy?  Of course you are: we all have more chores to do than we can get done.

But here are 90 of the world’s busiest people. They squeezed in the time somehow; maybe you can do the  same.

Most supported us with an endorsement letter: like Bill “Superfoot” Wallace, five-time world champion in full contact karate. You might have seen him in movies (usually as the villain) fighting Chuck Norris and Jackie Chan—Bill Wallace wrote one of our very first letters of support, back when “Roman’s Law” was just beginning.

Others helped in different ways. U.S. Representative Nancy Pelosi, clearly one of the busiest women on the planet, gave several hours of her life to attend the American Paralysis Association dinner, when Roman and I received the Willie Shoemaker award for advancing awareness of paralysis. Ms. Pelosi sat beside my wife Gloria and our son, and maybe her phone was ringing all night, but Leader Pelosi was there.  

Sadly, some are gone from us, like Christopher “Superman” Reeve, and General “Stormin’ Norman” Schwarzkopf—but their shining example still lights our way.

I wish we could use the same letters over and over again, but we cannot.  Every new bill requires a new letter. So every campaign I must reach out, and ask for help again…

Here are some of the world’s busiest people, who stood up for paralysis cure.   

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;

Dr. Jacqueline Bresnahan (UCSF), Dr. Mike Beattie (UCSF), co-inventors of Beattie-Bresnahan Scale;

Nina Brown, Founding Board member, Lorraine Chammah, President,
Texans for Advancement of Medical Research;

California Institute for Regenerative Medicine’s Chair Jonathan Thomas;

Susan Chandler, Treasurer, California Disability Rights Organization;

Dr. Jose Cibelli, Champion Michigan research leader;

Ellen Corbett, California Senate Leader;

Stemcyte, President Calvin Cole;

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

Dr. Graham Creasey (Palo Alto VA & Stanford);

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

John Dutra, (D-Fremont, retired) original author of the 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);

Dr. Michael Fehlings (University of Toronto);

Lucy Fisher and Doug Wick, executives at 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 Affairs;

John Garamendi, U.S. House of Representatives;

Leeza Gibbons, former Host of Entertainment Tonight, founder of Leeza’s Place;

Lawrence Goldstein, Director, UCSD Stem Cell Program;

Stu Gordon, Gordon and Rees, LLP;

Molly Ingraham, of the California Healthcare Institute (CHI, representing more than 100 biomedical companies);

Hans Keirstead, UC-Irvine Professor, Chair, Scientific Advisory Board, California Stem Cell, Inc.;

Marc Keahey, Alabama Senate Minority Leader;

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, Chairman Emeritus of the Independent Citizens Oversight Committee;

Dr. Paul Knoepfler (UC Davis), world’s only blogging stem cell scientist;

Dena Ladd, Executive Director, Missouri Coalition for Lifesaving Cures;

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

Dr. Jane Lebkowski (Neuralstem Cell Inc);

Stem Cells Inc., Martin McGlynn, President & CEO;

Dr. Stephen McKenna (Santa Clara Valley Medical Hospital);

Karen Miner, Chair, Research for Cure;

Ed Monuki, Associate Professor, UC Irvine;

Chris Murphy, United States Senator, Connecticut;

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

Gavin Newsom, Lt.Governor, California;

Dr. Jan Nolta (UC Davis);

Richard Patterson, M.D., Santa ClaraValleyMedicalCenter;

Nancy Pelosi, Minority Leader, House of Representatives;

Renee A Reijo Pera, Director of Reproductive and Stem Cell Biology Division, StanfordUniversity;

John Perez, CA Assembly Speaker; 

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

Claire Pomeroy, Chief Executive Officer, UC Davis Health Department;

The late Christopher Reeve, “Superman” in movies, champion of advocates;

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

Bill Remak, Chairman, California Hepatitis Task Force;

Duane Roth, CEO, CONNECT, entrepreneurial group;

Rose Marie Salerno, VA Palo Alto Health Care System;

Lori Sames, Executive Director, Hannah’s Hope Fund;

The late General Norman “Stormin’ Norman” Schwartzkopf, retired;

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

Dr. Jerry Silver (Case Western);

Marilyn Smith, Executive Director, Unite 2 Fight Paralysis;

Michael Sofroniew, M.D., Professor, UCLA; 

US Representative Eric Swallwell;

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

Dr. Ann Tsukamoto (Stem Cells Inc);

Dr. Marc Tuczynski (UCSD);

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

Bill “Superfoot” Wallace, undefeated 5-time full-contact World Karate Champion;

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

Dr. Irv Weissman, Stem Cell Inc.;

Steve Westly, Former CA Comptroller;

Christi Yamaguchi, Olympic Gold Medalist, figure skating;

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

Wise Young, RutgersUniversity, pioneer of spinal cord injury research for cure, co-inventor of methylprednisolone, and 4-AP, currently developing clinical trials for cordblood and lithium in China;

Mark Yudof, former President of the University of California;

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;

Still others who helped the cause of spinal cord injury research for cure: Dr. Leif Havton (UCI), Dr. Deepak Srivistava (Gladstone Institute), Dr. Evan Snyder (Sanford Burnham), Dr. Tim Wick (UAB),  Dr. Gary Steinberg (Stanford),  professional athletes Brent Jones and Jim Harbaugh of the San Francisco 49’ers, television personality Gary Stevens, TJ Atchison (first paralyzed person in the world to receive embryonic stem cells in his spine), Tory Minus, vice president Alabama Institute of Medicine,  three great fire-fighters–Hayward Fire Chief Garrett Contreras, Fremont Fire Chief Dan Lydon (Ret.), Firefighter of the Year Jeff Leonard– folks at EKSO Bionics and  Bay BIO, and thousands more, wheelchair warriors Fran Lopes, Karen Miner and Susan Rotchy of Research for Cure, and thousands more friends and family—

–and, hopefully—you!

 

IF YOU WERE PARALYZED: Two Champion Researchers Fighting on Your Side

IF YOU WERE PARALYZED…Two  Champion Researchers Fighting on Your Side

 By Don C. Reed

 Imagine being paralyzed: whatever position you are in right now, you must stay there– until someone comes to move you.

As an American, the chances of you becoming paralyzed are roughly one in fifty.

http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5184189/k.5587/Paralysis_Facts__Figures.htm

With a U.S. population of 315 million, an estimated 5.6 million children and adults suffer paralysis. That’s 1.7% of America’s population, members of your family and mine.

One is my friend who recently incurred a nerve condition called Guillain-Barre’ (gee-on burray, GB) syndrome. He was paralyzed in hands and legs, but fortunately had the good sense to get to a physician immediately. GB can be fatal, if the chest cannot rise so the lungs inhale; the paralysis it brings can also be permanent, but generally it is not. GB affects the outer nervous system (peripheral) not the brain and spine. If all goes well, he should recover fully in one to six months.

My son Roman Reed became paralyzed with a spinal cord injury during a 1994 college football accident. His condition is considered permanent—but not by everyone.

Roman is not waiting around. He may require assistance to get out of bed in the morning, but once he is up, he is moving, fighting, working to develop a cure for paralysis.

Right now, a California bill called AB 714 is being proposed by Assemblyman Bob Wieckowski (D-Fremont)—to raise $2 million a year for paralysis cure research—restoring funding to the Roman Reed Spinal Cord Injury Research program. The first hearing was held on April 16^th, in the Health Committee at the State Capitol, Sacramento, and it passed 16-2.

The next hearing will be at May 1^st ., 9:00 AM in the Appropriations Committee, and that will be much tougher. We may win or lose by a single vote.

 Want to help? Send a FAX message (or e-mail, but FAX is better) to the chair of the committee, tell him you strongly support AB 714.

 Chair: Mike Gatto—fax (916) 319-2043;  email: Assemblymember.Gatto@asm.ca.gov

 What kind of scientists will receive grants, if AB 714 becomes law?

 Hans Keirstead and Mark Tuszynski are world leaders in paralysis cure research. Both have received grants from the Roman Reed program in the past, small grants which led to larger ones from institutions like the National Institutes for Health (NIH), the Christopher and Dana Reeve Foundation, and the magnificent California stem cell program.

 The two men are very different. Tuszynski is quieter, preferring to focus on the science.

 Dr. T. admits he was a skeptic about using stem cells to replace nerves lost after spinal cord injury.

 “I did not think it would have much of an impact,” he said, “because of the difficulty in growing axons through the injured spinal cord, and the complexity of neural brain circuits. How would stem cells navigate through the maze of the spinal cord?”

 Tuszynski’s opinion changed after his group started working on neural (nerve) stem cells, at the urging of a paraplegic scientist, Paul Lu, in his center for neural repair at UCSD.

 “We tagged the nervous system-derived stem cells with a green fluorescent marker, which allowed us to track the cells after putting them into the spine,” he said.

 “To keep the cells from washing out of the spinal cord, we embedded them in a gel. Finally, we added proteins, to stimulate the cells’ survival.

 “To our astonishment, the grafted nerve cells extended new connections (axons) over long distances, some nearly the entire length of the spinal cord.”

 It is amazing to see. Usually, when a non-scientist like myself looks at a photograph of a damaged spine, it is hard to tell what is going on. A v-shaped gap in the spinal column, a little tentative fuzz which might or might not be new growth—hard to get excited.

 This was different. At a recent meeting of the California stem cell program, the audiencegasped at the micro-photograph of green-marked nerves leaping across the gap in the injured spinal cord, reconnecting on the other side. The new nerve cells were marked with green, so you could follow the growth—it was like the whole spine was slathered with lime green paint.

 And what did it mean, in practical terms, was there any recovered motion?

 “Injured rats with completely severed spinal cords recovered significant motion, including the ability to move every joint of their limbs…” said Dr. Tuszynski, “But they still could not support their weight on their legs. So there is still room for improvement.”

 But Tuszynski and his colleagues are moving forward to test the procedure on non-human primates at UC Davis. Success or failure there will determine if the approach is brought to human trials…

 And after that?

 “Chronic”, he said. That is a huge word to a paralyzed person. It means permanent, i.e. anyone who has been paralyzed more than a couple of weeks, and is likely to remain so. Most experiments are done with new injuries, called acute.  These may recover to an extent on their own, so it is hard to tell if a treatment worked or not. But if improvement is gained for a chronic patient, who has been paralyzed over time, that is success.

 And the second scientist?  Dr. Hans Keirstead is an outgoing individual who loves to fly his own helicopter—and is a master of the world of business.  

 Professor of Anatomy and Neurobiology at UC Irvine, Hans founded the Sue and Bill Gross Stem Cell Research Center, and holds a leadership position at California Stem Cell, Inc.

 Famous for his use of stem cells to re-insulate damaged spinal nerves, an approach which Geron Inc. took all the way to human trials, (canceled for financial reasons, the tests were successful in their purpose, to test for safety),  Keirstead also did pioneering work with an injectable protein called IP-10.  He states that “The treatment showed strong efficacy in Phase 2 clinical testing in humans with ulcerative colitis and rheumatoid arthritis. It is anticipated that the treatment will be used ‘off label’ for Spinal Cord Injury and other diseases and injuries of the nervous system”.

 Working with his father, Hans built hospitals in Africa, distributing 600 wheelchairs and several tons of multi-vitamins.

His stem cell expertise involves him in many endeavors, including human trials of a way to fight cancer. (“Not my invention,” he hastens to add, ‘The approach was invented by Dr. Robert Dillman of HoagHospital. I led the scale-up of the manufacturing, and the commercialization of the program.”)

Presently he is attacking the problem of the spinal cord scar, which develops at the injury, and blocks the messages between brain and body.

 Why did spinal cord injury call to him?

“The spinal cord is anatomically simpler than the brain, and controls functions that are easier to measure than the brain,” he responds.

Treatments which help spinal cord injury may also help traumatic brain injury, ALS (amyolateral sclerosis, Lou Gehrig’s disease), stroke, cerebral palsy, spina bifida, Parkinson’s, muscular dystrophy, multiple sclerosis, Spinal Muscular Atrophy (SMA, a cruel condition which paralyzes and kills children, often before the age of two) and more.

 Keirstead is attacking paralysis from four directions: to reduce the damage from the body’s reaction to new injuries; attempting to eliminate the spinal cord scar to allow nerve communication between brain and body; reinsulating of damaged nerves in the spinal cord; and the development of the motor neurons, great long nerves which stretch from spinal cord to muscle.

 These are scientists the Roman Reed Spinal Cord Injury Research Act has funded in the past, and may again if AB 714 (Wieckowski, D-Fremont) becomes law.

 And if their research is not funded, so that paralysis continues, uncured?

 A paralyzed person faces lifetime medical costs of one to five million dollars.

 A single individual’s medical care could cost more than the entire annual funding of the program to end paralysis.

 Cure—or the unending expense of lifetime care—that is our decision.

 

FAXES NEEDED FOR PARALYSIS CURE RESEARCH PROGRAM

SUPPORT FAXES NEEDED FOR PARALYSIS CUREBILL

Call or send Faxes of support for AB 714 to:

Chair: Mike Gatto P.O. Box 942849, Room 2114, Sacramento, CA94249-0043; (916) 319-2043

Fax: (916) 319-2143

 Email: Assemblymember.Gatto@asm.ca.gov

 Dear Friend of Paralysis Cure:

 If you know about the Roman Reed Spinal Cord Injury Research Act, please send a FAX to the Appropriations Chair Mike Gatto, (916) 319-2143. Tell him you strongly support Assembly Bill 714 (Wieckowski, D-Fremont). Emails are also helpful, but less so.

 If you do not know about the RR Act, read on—and then send your FAX of support.

 May 1, this coming Wednesday, 9:00 AM, is the Appropriations Committee hearing on the bill: a sink-or-swim moment. If you possible can, JOIN US AT THE MEETING in Sacramento, Room 4203, CapitolBuilding. You will have an opportunity to voice your support, if you wish.

 Now, background.

  Assembly Bill 714 (Wieckowski, D-Fremont) would restore funding to the RR Act.

 The program began in 2000, was unanimously renewed in 2005, and again in 2010—but the second time the funding was removed. We worked with Assemblyman Wieckowski to develop alternative methods to fund the program via traffic ticket add-ons. Last year’s proposal ($1 per ticket) passed both Assembly and Senate but Governor Brown vetoed it, saying penalties were not a good method to fund programs.

 Few would deny the program has been an overwhelming success, even judged by purely financial terms alone.

 Here is a recent update from Dr. Oswald Steward of the Reeve-IrvineResearchCenter at UC Irvine, who oversees the program:

 “Since its inception in the year 2000, the Roman Reed Spinal Cord Injury Research Act has spent $17.1 million on research.  This unique program has attracted $89,045,799 in additional funding from the National Institutes of Health and other sources: new money for California.”

 Spending seventeen million while attracting eighty-nine million is unusual, to say the least. There is also the multiplier affect of public dollars going into the private economy.

 AB 714 asks for $2 million a year from the general fund. According to the Legislative Analyst’s Office projection, this is not a lot of money, approximately five one-hundredths of one per cent of the estimated surplus. ($450 million).

 California cannot afford NOT to fund cure research; the cost of doing nothing is too high.

 A paralyzed person faces a mountain of medical bills, as much as $3 to $5 million in lifetime medical expenses. Most have no choice but to go on public assistance.

 But a small improvement for a paralyzed person can be a huge help in financial savings. According to Dr. Aileen Anderson, Director of the Christopher and Dana Reeve Foundation Spinal Core Injury Core Lab, “even a treatment that restored as little as 1-2 levels of…function… could save $1.4 million over the lifetime of one patient.”

 For example, my son is paralyzed in both upper and lower body. When he was first injured in 1994, we put him through grueling rehabilitation workouts (going deep in debt to do so) and an experimental medication (Sygen) then in clinical trials with the FDA.

 Roman regained his triceps function. This allows him to drive an adapted vehicle instead of having to pay an attendant. He can help get himself out of bed in the morning, instead of needing a mechanical hoist.

 Why single out spinal cord injury research for funding?

 Connecting brain and body, the spine is central to our every bodily action and function. Accordingly, studying spinal cord injury benefits many conditions: multiple sclerosis, muscular dystrophy, ALS, spinal muscular atrophy (which kills children, often before the age of two), Alzheimer’s, Parkinson’s, traumatic brain injury, stroke, and more.

 Approximately 5.6 million Americans are paralyzed today. Each of these people has a family, which shares the suffering. Just a shower and bathroom use can take 2 hours.

 California funds medical research. For example, the California Breast Cancer Research Program  (http://cbcrp.org/), established in 1993, has spent  $230 million, to:  “make grants for …researchers to find better ways to prevent, treat and cure breast cancer.” 

 Even as breast cancer research offers hope for colon and skin cancer sufferers, so paralysis research brings many neurological conditions closer to cure. 

 The RR program also offers a core laboratory where new scientists can learn and veterans can utilize outstanding equipment.

 The program is not duplicative of the California stem cell program. While the RRAct was a pioneer in stem cell research, only 9 projects out of 129 involved stem cells. Most of the work revolves around the “everything else”: step-by-step foundational efforts. 

 For instance, when cure comes, how will the frozen muscles learn to work together again? We need cheap but effective rehab methodology. Instead of the treadmills on which paralyzed people “walk” with the aid of several (expensive) assistants, a new approach may duplicate that process robotically, bringing down the costs of cure.  

 Among other challenges, Roman Reed projects attempt to:

 Find ways to limit damage after the accident: sadly, the body’s immune system attacks itself, further injuring the spinal cord. Reducing this would save function, so a person might walk out of a hospital instead of needing a wheelchair;

• promote regeneration, studying how the salamander re-grows its severed spine;
• Remyelinate (re-insulate) damaged spinal nerves; this was a huge success for us, resulting in the famous “rats that walked again”, featured on TV’s SIXTY MINUTES, and leading to the (successful) Geron trials for safety. While Geron ran out  of money and quit, the process itself has been sold and is being renewed.
• Implant biological “bridges” around the spinal scar to guide re-growing nerves;
• Retrain the spinal cord itself by progressive weight-bearing, and electrical stimulation;
•  Reduce pressure sores which can keep a person bedridden for months;
•  Address bowel, bladder, and reproductive difficulties.

Folks, Roman, myself, Karen Miner and many more have been in this fight for nineteen years. I really think we are close to finding a cure.

Please help us fund the program to make it happen.

 

 

CAPITOL BATTLE: Paralysis Cure Research Bill Reaches Health Committee

    http://www.huffingtonpost.com/don-c-reed/capitol-battle-paralysis-_b_3102993.html

Two million for paralysis cure?

Dear Supporter of the Roman Reed Spinal Cord Injury Research Act:

We are trying for $2 million a year for paralysis cure research, to restore funding to the Roman Reed Spinal Cord injury Research Act. May I ask your help again?

In Sacramento, the Assembly Health Committee will be considering the bill on Tuesday, April 16^th. Before then, FAXes (preferable) and E-mails in support will be printed and hand-carried to the Committee Chair’s office. So we need to get support letters now.

Please FAX or e-mail (on letterhead) your support for California’s new bill (AB 714, D-Wieckowski) to restore funding to the Roman Reed Spinal Cord Injury Research Act.

Important: if you sent a letter last year, you may use it again, but please alter the letter to reflect the new bill.  

Changes are:

1. The new bill number is AB 714;

2.  Remove references to traffic tickets, last year’s source of funding; and

3. We are requesting $2 million from the general fund.

Ideally, send your letter to the sponsor’s office, and all committee members. If time prohibits, please send just one FAX or email to bill author Bob Wieckowski’s office:

Dharia McGrew is the Legislative Aide in charge of the effort: so send to:  FAX 916-319-2125,  or E-MAIL to: Dharia.McGrew@asm.ca.gov

Thank you very much!

Don C. Reed, citizen-sponsor, Roman Reed Spinal Cord Injury Research Act

Co-chair, Californians for Cures

Here is a sample letter:

RE: support for Assemblybill AB 714 (Wieckowski, D-Fremont)

Dear Assemblyperson,

I,(YOUR NAME), support Assembly Bill 714 (Wiekowski, D-Fremont) to provide annual funding of $2 million for the Roman Reed Spinal Cord Injury Research Act.

 For both humanitarian reasons and to reduce the tremendous financial burden on California tax payers and families, this should be a number 1 priority! Although the path to cure is never easy, (the search for the polio vaccine lasted seventeen years, from 1938-1955) even the smallest improvement gives amazing benefits to paralyzed people and their families. For instance, rigorous rehabilitation recovered one individual’s triceps muscles, thereby allowing him to drive an adapted van, rather than needing an attendant. But what kind of rehabilitation is most efficacious? Only research will tell.

The RR Act is not duplicative. While we have done stem cell research in the past, we do not seek to compete with California’s magnificent stem cell program. Our focus is primarily on the “everything else” that must be accomplished to improve the quality of life for paralysis sufferers, while working to bring together the puzzle of cure.

Roman Reed grants provide seed money for scientists, who often use success with our small grants to leverage far larger funding from the NIH and other sources.

Perhaps uniquely among all California programs, the Roman Reed Act has brought in more money than it cost taxpayers; $15 million in funding brought in an additional $86 Million in grants from out of state, new revenues for California.  

Full Text of  AB 714: http://leginfo.ca.gov/pub/13-14/bill/asm/ab_0701-0750/ab_714_bill_20130402_amended_asm_v98.pdf

For an electronic visit to the Roman Reed Lab, go to: http://www.reeve.uci.edu/roman-reed-core-laboratory.html

Questions? Read the 68 page progress report: http://www.reeve.uci.edu/pdf/Roman-Reed-Act-Complete.pdf)

Sample projects of the sort we fund?  http://romanreedfoundation.com/spinal-cord-stem-cell-research/

Your support for AB714 may be the most significant legislative act of the year.

I look forward to hearing from you.

Your Name

P.S. Time is short; we had little notice ourselves—do please write your letter ASAP!

P.S.S. At the very bottom of the page are some of the amazing people who have honored the Roman Reed Spinal Cord Injury Research Act over the years. We were saddened, however, to lose one of our earliest champions, General “Storman Norman” Schwarzkopf. He joins Christopher “Superman” Reeve in the pantheon of heroes who were never too busy to do a little more to help.

P.S.S. If you have the time, send a copy of your letter to the 20 members of the Health Committee who will hear the bill first….

Assemblyperson Richard Pan (Chair)

Dem – 09

P.O. Box 942849, Room 6005, Sacramento, CA 94249-0009; (916) 319-2009

Fax 916-319-2109

Richard.Pan@asm.ca.gov

Assemblyperson Dan Logue (Vice Chair)

Rep – 03

 P.O. Box 942849, Room 4158, Sacramento, CA 94249-0003; (916) 319-2003

Dan.Logue@asm.ca.gov

Assemblyperson Tom Ammiano

Dem – 17

Fax 916-319-2103

 P.O. Box 942849, Room 3146, Sacramento, CA 94249-0017; (916) 319-2017

Tom.Ammiano@asm.ca.gov

Assemblyperson Toni Atkins

Dem – 78

Fax 916-319-2117

 P.O. Box 942849, Room 319, Sacramento, CA 94249-0078; (916) 319-2078

Toni.Atkins@asm.ca.gov

Assemblyperson Susan A. Bonilla

Dem – 14

Fax 916-319-2178

 P.O. Box 942849, Room 4140, Sacramento, CA 94249-0014; (916) 319-2014

Susan.Bonilla@asm.ca.gov

Assemblyperson Rob Bonta

Dem – 18

Fax 916-319-2114

 P.O. Box 942849, Room 6025, Sacramento, CA 94249-0018; (916) 319-2018

Rob.Bonta@asm.ca.gov

Assemblyperson Wesley Chesbro

Dem – 02

Fax 916-319-2118

 P.O. Box 942849, Room 2141, Sacramento, CA 94249-0002; (916) 319-2002

Wesley.Chesboro@asm.ca.gov

Assemblyperson Jimmy Gomez

Dem – 51

916-319-2102

 P.O. Box 942849, Room 2176, Sacramento, CA 94249-0051; (916) 319-2051

Jimmy.Gomez@asm.ca.gov

Assemblyperson Roger Hernández

Dem – 48

916-319-2151

 P.O. Box 942849, Room 4146, Sacramento, CA 94249-0048; (916) 319-2048

Roger.Hernandez@asm.ca.gov

Assemblyperson Bonnie Lowenthal

Dem – 70

916-319-2148

 P.O. Box 942849, Room 3152, Sacramento, CA 94249-0070; (916) 319-2070

Bonnie.Lowenthal@asm.ca.gov

Assemblyperson Brian Maienschein

Rep – 77

Fax 916-319-2170

 P.O. Box 942849, Room 3098, Sacramento, CA 94249-0077; (916) 319-2077

Brian.Maienschein@asm.ca.gov

Assemblyperson Allan R. Mansoor

Rep – 74

Fax 916-319-2177

 P.O. Box 942849, Room 4177, Sacramento, CA 94249-0074; (916) 319-2074

Allan.Mansoor@asm.ca.gov

Assemblyperson Holly J. Mitchell

Dem – 54

Fax 916-319-2174

 P.O. Box 942849, Room 2163, Sacramento, CA 94249-0054; (916) 319-2054

Holly.Mitchell@asm.ca.gov

Assemblyperson Adrin Nazarian

Dem – 46

Fax 916-319-2154

 P.O. Box 942849, Room 4015, Sacramento, CA 94249-0046; (916) 319-2046

Adrin.Nazarian@asm.ca.gov

Assemblyperson Brian Nestande

Rep – 42

Fax 916-319-2146

 P.O. Box 942849, Room 4139, Sacramento, CA 94249-0042; (916) 319-2042

Brian.Nestande@asm.ca.gov

Assemblyperson V. Manuel Pérez

Dem – 56

Fax 916-319-2142

 P.O. Box 942849, Room 4112, Sacramento, CA 94249-0056; (916) 319-2056

Manuel.Perez@asm.ca.gov

Assemblyperson Donald P. Wagner

Rep – 68

Fax 916-319-2156

 P.O. Box 942849, Room 2158, Sacramento, CA 94249-0068; (916) 319-2068

Donald.Wagner@asm.ca.gov

Assemblyperson Bob Wieckowski

Dem – 25

916-319-2168

 P.O. Box 942849, Room 4016, Sacramento, CA 94249-0025; (916) 319-2025

Bob.Wieckowski@asm.ca.gov

Assemblyperson Scott Wilk

Rep – 38

Fax 916-319-2125

 P.O. Box 942849, Room 4153, Sacramento, CA 94249-0038; (916) 319-2038

Fax 916-319-2138

Scott.Wilk@asm.ca.gov

 

Over the years, the Roman Reed Spinal Cord Injury Research Act has been honored by the support of:  Nobel Peace Prize Winner Dr. Shinya Yamanaka, US Senator Chris Murphy, US House Minority Leader Nancy Pelosi, US Representative John Garamendi, US Representative Eric Swalwell, CA Lt.Governor Gavin Newsom,  CA Senate Leader Ellen Corbett, CA Assembly Speaker John Perez, Former CA Comptroller Steve Westly, Former Democratic Chair Art Torres, AL Senate Minority Leader Marc Keahey, Sherry Lansing who received the Jean Hersholt Humanitarian Award, Bob Klein who led Prop 71 to be the California stem cell program, numerous members of the board of the California Institute of Regenerative Medicine, CIRM Chair Jonathan Thomas, the Gladstone Institute, Christopher Reeve, the Christopher and Dana Reeve Foundation, General (ret.) Norman Schwarzkopf, and Stuart M. Gordon, Dr. Hans Keirstead (UCI & CA Stem Cell Inc), Dr. Irv Weissman (Stanford & Stem Cells Inc), Nobel Laureate Dr. Paul Berg (Stanford),  Dr. Paul Knoepfler (UC Davis), Dr. Candace Floyd (UAB), Dr. Stephen McKenna (Santa Clara Valley Medical Hospital), Dr. Jerry Silver (Case Western), Dr. Os Steward (UCI & SCI Director of Roman’s Law), Dr. Alisa Gean (UCSF),  Dr. Ann Tsukamoto (Stem Cells Inc), Dr. Wise Young (Rutgers), Dr. Brock Reeve (Harvard Stem Cell Institute)  Dr. Jacqueline Bresnahan (UCSF), Dr. Mike Beattie (UCSF), Dr. Marc Tuczynski (UCSD), Dr. Graham Creasey (Palo Alto VA & Stanford), Dr. Michael Fehlings (Univ of Toronto), Dr. Jan Nolta (UC Davis), Dr. Jane Lebkowski (Neuralstem Cell Inc), Dr. Ed Wirth (Neuralstem Cell Inc), Dr. Leif Havton (UCI), Dr. Deepak Srivistava (Gladstone Institute), Dr. Evan Snyder (Sanford Burnham), Dr. Tim Wick (UAB), Dr. Reggie Edgerton (UCLA), Dr. Gary Steinberg (Stanford),   Brent Jones and Jim Harbaugh of the San Francisco 49’ers, Olympic Champion Kristi Yamaguchi, Gary Stevens, TV Host Leeza Gibbons, TJ Atchison, Tory Minus,  Hayward Fire Chief Garrett Contreras, Fremont Fire Chief Dan Lydon (Ret.), Firefighter of the Year Jeff Leonard, legendary Hollywood director Jerry Zucker, Stem Cells Inc. California Stem Cell Inc. Neuralstem cell Inc., EKSO Bionics, Bay BIO, Santa Clara Valley Medical Hospital,  the University of California System—and, hopefully, you.

 

Mighty Mouse and Medical Research: California Legislator Fights for Paralysis Cure

MIGHTY MOUSE AND MEDICAL RESEARCH: Legislator Champions Paralysis Cure

By Don C. Reed

A 1940’s black and white cartoon featured a war between mice and cats, in which the cats looked very much like Nazis. The mice were under attack, the odds were against them. But they organized, fought back—and (with a little help from Mighty Mouse!) defeated the Nazi cats.

The cartoon’s music was a genuinely stirring song by Charles Tobias, “We Did It Before and We Can Do It Again!”, written in 1940, in response to the attack on Pearl Harbor… Here is the chorus:

“We did it before, and we can do it again, yes we can do it again; we did it before—and we’ll do it again!”

Since 1998, disabled citizens of California and their families have been fighting a war against paralysis.

Our weapon was a research-funding law, the Roman Reed Spinal Cord Injury Research Act of 1999, named after my paralyzed son. (One of our earliest supporters was the real-life warrior, the late General Norman “Stormin’ Norman” Schwarzkopf.)

In 1999, led by Assemblyman John Dutra (ret.), the bill became law. In 2005, patient advocates battled again, to renew the program’s funding. Each time we wrote hundreds of letters and wrestled the bill through committee hearings—and the money was restored.

But in 2010, the economy went South and our law’s funding was removed.

In 2011, we fought back with a new bill—which was defeated in the finance committee.

In 2012 we brought another bill, and this one passed the Assembly, passed the Senate—before Governor Jerry Brown vetoed it, saying he did not approve of our funding mechanism, an add-on fee for traffic tickets..

But as the song says:

“We did it before, and we can do it again, yes, we can do it again…”

This year, 2013, we are back again: this time with two bills, AB 714 and AB 666; different ways to fund paralysis cure research. Their details are not clear yet, but one will generate income from a (drastically reduced) red light fine; the other will be a straight funding request from the general fund.

Crucially, we have a champion to lead the fight.

Both new bills are being brought by Assemblyman Bob Wieckowski (D-Fremont).

This is the same stalwart Wieckowski who in 2011 and 2012 led our funding bills through all the various committee hearings, rallying support, delivering speeches, dealing with challenges—only to have it shot down by the Governor’s veto.

After trying twice, most legislators would have given up.

Fortunately for paralysis cure research, Bob Wieckowski is not “most legislators”!

With a cheerful smile– and the unbending determination of a Mighty Mouse cartoon– Assemblyman Bob is trying again.

What are we fighting for?

We want to put laboratory tools in the hands of scientists, so they can free America’s five and a half million citizens from the slavery of paralysis.

Tools…the Roman Reed Lab at the University of California, Irvine, has a $550,000 super microscope, so scientists can actual observe what makes a spinal nerve grow—or not.

If approved, a young scientist (or an old one) can be trained to use equipment like that—and learn the mechanics of spinal cord repair, at the Roman Reed Lab.

Administered by the University of California system, the Roman Reed Core Laboratory at UC Irvine has become one of the key spinal cord injury (SCI) research institutions in America.

The grant-funding portion of the program has employed over 200 scientists and their staffs.

Small but mighty, “Roman’s Law” has achieved 185 published scientific papers, each a small breakthrough, a piece of the puzzle of cure.

Our breakthroughs range from practical to amazing: from cost-saving new methods of rehabilitation using robotics, to a “helmet” which reads brain waves, so a paralyzed person can control a computer, to an electronic “bridge” to surpass the wound injury scar, to a way to reduce the injury itself by modifying the body’s immune reaction.

Astonishingly, the Roman Reed Act is revenue-positive, bringing in more money than was invested. Our program spent roughly $14 million California taxpayer dollars—but it attracted an additional $89 million in matching grants from outside sources like the National Institutes of Health—new money for the state.

The program is supported by Lt. Governor Gavin Newsom, the University of California (UC) system, Art Torres (California State Senator, ret), Bob Klein (author of the California stem cell program), Jonathan “JT” Thomas, the program’s current chair, legislators like Bill Monning, Gil Cedillo, Tom Ammiano, Jerry Hill, Holly Mitchell, V. Manuel Perez, Nancy Skinner, Mike Davis, the California Healthcare Institute (CHI), Hans Keirstead (his project achieved the world’s first embryonic stem cell research human trials) Shinya Yamanaka (who invented a substitute for embryonic stem cells) and his fellow Nobel Laureate Paul Berg (Nobel Prize-winner for DNA research), Sherry Lansing (former President, Paramount Pictures), former state controller Steve Westly, Leeza Gibbons (Board Member California stem cell research program, former host Entertainment Tonight), Brock Reeve (Christopher’s brother and director of Harvard Stem Cell Institute), Jeanne F. Loring (Director, Center for Regenerative Medicine at Scripps Research Institute) , Mary Vassar, Executive Director UCSF, San Francisco General Hospital Brain and Spinal Injury Center) and many more.

In Southern California, visit the Roman Reed Laboratory at UC Irvine*. Or check out our website (http://www.reeve.uci.edu/Research/RomanReed.aspx and download our 58-page report.

Christopher Reeve made a prediction: “One day, Roman and I will stand up from our wheelchairs, and walk away from them forever.” Cure did not come in time for the paralyzed Superman, but the flame of his faith still lights our way. As he always said, we will “go forward”, and we will prevail.

Can we pass a funding bill for paralysis cure research?

“We did it before—and we’ll do it again!”

*Saturday, March 16th, visit the Annual “Meet the Scientists” Forum, 12-4 pm, at the William J. Gillespie Neuroscience Research Facility, University of California, Irvine. –contact Tania Jope for details: Tania.jope@uci.edu 949-824-5925

BE CALIFORNIA’S GUEST:  MAJOR STEM CELL EVENT: SAN FRANCISCO, MARCH 7   

By Don C. Reed

Thursday, March 7 • 6:30 pm – 7:45 pm

Grand Ballroom, Hyatt Regency San Francisco
5 Embarcadero Center, San Francisco, California, USA 94111

Folks, this is something wonderful—and it’s free! Normally, admission to a gathering of these top scientists might cost a thousand bucks or up, especially in an intimate setting where you can meet them one on one—but on March 7^th, you are invited as California’s guest.

It will be short, just an hour and a half, but intense, not to be missed. There are three parts to it:

First, twenty minutes to check out the latest research on “people-talk” posters in the back of the room. Normally, scientific posters describing medical breakthroughs are very tough reading, but these will be aimed at people like you and me– the general public.

Four outstanding scientists/doctors/advocates will speak for eight minutes each. They are:

Patient Advocacy
Francisco Prieto, President of the Sacramento-Sierra chapter of the American Diabetes Association

“All of us – scientists, doctors, advocates – don’t just work in some abstract environment. We try to gain knowledge, not just for its own sake, or because we’re curious creatures (though we are), but because we can use that knowledge to improve our lives and prevent suffering…we should all be advocates.”

Diabetes
Eugene P. Brandon, Ph.D., Director, Strategic Relations and Project Management, ViaCyte

“ViaCyte is harnessing the versatility of stem cells to develop an entirely new therapy for insulin-dependent diabetes. The planned product is a credit card-sized medical device, worn under the skin, which contains cells designed to restore the normal blood glucose regulation that patients have lost. If the product works in humans as it does in mice, it may alleviate not only the short term requirements for frequent blood glucose monitoring and insulin rejections, but also the more dire and costly long term aspects of diabetes such as blindness and amputations.”

Spinal Cord Injury
Mark H. Tuszynski, M.D., Ph.D., Professor of Neuroscience, U.C. San Diego

“We have found that neural stem cells have an astonishing ability to send new connections (“axons”) into the injured spinal cord. This represents a new and exciting target for potential therapy of SCI. It is a very different approach when compared to previous efforts to use stem cells to treat SCI.”

Osteoporosis
Nancy E. Lane, M.D., Professor of Medicine and Rheumatology, U.C. Davis

“To fight osteoporosis, we are bringing the patient’s own stem cells to the surface of the bone to grow new bone.”

After their brief remarks, twenty of America’s best researchers (see below) will be available to you for personal questions. They will not lecture, but walk around the room, meeting you.

Each scientist will have a badge on with the name of the disease—ALZHEIMER’S, for example—and all you have to is walk up, say hello and ask your question.

Here are their names—champions all:

TENTATIVELY SCHEDULED:

Jeanne Loring, Scripps Institute, Multiple Sclerosis

Claude Bernard, Monash University, Multiple Sclerosis

Heather Schultheiz, Scripps Institute, Cancer and Stem Cells

Ileana Slavin, Scripps Institute, Parkinson’s Disease

Karen Aboody, City of Hope, Brain Cancer

John Zaia, City of Hope, HIV/AIDS

Geoff Symonds, Calimmune, HIV/AIDS

Eugene Brandon, Viacyte, Diabetes

Allan Robins, Viacyte, Diabetes

Dhruv Sareen, Cedars Sinai, Spinal Muscular Atrophy

Dennis Cleg, UC Santa Barbara, Blindness

Roxanne Croze, UC Santa Barbara, Blindness

Joseph Gold, Stanford, Heart Disease

Catriona Jamieson, UC San Diego, Leukemia

Fay Jiang, UC San Diego, Leukemia

Henry Klassen, UC Irvine, Blindness

Jing Yang, UC Irvine, Blindness

Jan Nolta, UC Davis, Huntington’s Disease

Heart Disease (not scheduled yet)

Alzheimer’s (not scheduled yet)

Don Gibbons, CIRM

Kevin McCormack, CIRM

Geoff Lomax, CIRM

Amy Adams, CIRM

Jonathan Thomas, CIRM

Maria Bonneville, CIRM

If you follow stem cell research, you will recognize many of these names. These are the best.

And you have a chance to meet them in person, and ask how stem cells may help defeat diseases you care about the most—because someone you love is affected.

Below is your official invitation from the California Institute for Regenerative Medicine: PLEASE RSVP—it’s easy!

http://www.mosaicevents.com/CIRMpublicmeeting/index.aspx?AspxAutoDetectCookieSupport=1

(And for more information, contact Don Gibbons, whose information is below.)

Thanks,

Don C. Reed

Please share the invitation below with family and friends and ask them to register online if they want to attend this opportunity to hear about progress in stem cell research.

We hope you will be our guests at:

Teaming up for cures: Progress and promise in stem cell research

Thursday March 7 • 6:30 pm – 7:45 pm

Grand Ballroom
Hyatt Regency San Francisco
5 Embarcadero Center
San Francisco, California, USA 94111

FREE event. Light snacks will be provided and a cash bar will be available.

Come learn how your state stem cell agency is fueling the development of new therapies for debilitating diseases and conditions like blindness, heart disease, diabetes, cancer and neurodegenerative disorders such as Alzheimer’s and Parkinson’s disease.

California’s stem cell agency, the California Institute for Regenerative Medicine (CIRM), is hosting an interactive presentation to update you on the latest in stem cell research and to give you a chance to ask scientists about progress in a disease that matters to you.

There will be brief presentations on the power of patient advocacy, and on the progress being made using stem cells to treat diabetes, osteoporosis and spinal cord injury. In addition, before and after these presentations, you can view lay-level posters about progress in several other diseases and chat one-on-one with researchers. The disease they are researching will be boldly identified on their nametags and they will be prepared to take your questions.

The state stem cell agency supports teams of researchers working toward therapies in 40 different diseases. This event will highlight a few of those teams developing stem cell therapies.

***!!! —We request that people planning to attend, RSVP at this web site:

http://www.mosaicevents.com/CIRMpublicmeeting/index.aspx?AspxAutoDetectCookieSupport=1

 

 

 

For more information, including Press Opportunities, contact:

Don L. Gibbons

Senior Science and Education Communication Officer

California Institute for Regenerative Medicine

“California’s Stem Cell Agency”

210 King Street

San Francisco, CA94107

415-396-9117