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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.

 

 

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

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 16th. 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: 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 7th, 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 

 

 

 

Amazing Team Research at the California Stem Cell Program

By Don C. Reed

As high as $20 million each, the disease team grants are the most spectacular research projects offered by the California stem cell program.

http://www.cirm.ca.gov/grants

The challenge is enormous: to succeed, each team of scientists must bring a therapy to human trials within just four years. At every step of the way milestones of progress must be met, or the funding stops—and every disease these teams will challenge has been declared chronic: incurable. A victory here would change medical history.

How are they doing? On March 19th, the next public meeting of the California stem cell program’s board of directors, there will be an update on the 25 teams in action now.

http://www.cirm.ca.gov/sites/default/files/sites/default/files/2013_ICOC_Schedule.pdf

Here are the teams: may they all succeed.

1. ALZHEIMER’S DISEASE: Alexandra Capela, of Stem Cells Inc., wants to transplant neural stem cells directly into the hippocampus portion of the brain, attempting to “markedly restore memory and thus, quality of life, for patients.”

http://www.cirm.ca.gov/Grant/restoration-memory-alzheimers-disease-a-new-paradigm-using-neural-stem-cell-therapy

2. BLINDNESS: Mark Humayun, USC, estimates that “by 2020, over 450,000 Californians will suffer from vision loss or blindness due to age-related macular degeneration…the loss of a layer of cells at the back of the eye…this can be overcome by transplanting (new) cells derived from embryonic stem cells…”

http://www.cirm.ca.gov/content/stem-cell-based-treatment-strategy-age-related-macular-degeneration-amd

3. BLINDNESS: Henry Klassen, UC Irvine, hopes to use cells to treat retinitis pigmentosa, (RP) a severe disease of the eye. His approach is to “save the light-sensing cells of the eye… an application will be made to the FDA… following approval, a small number of patients with severe RP will be injected with cells in their worse-seeing eye.”

http://www.cirm.ca.gov/Grant/retinal-progenitor-cells-treatment-retinitis-pigmentosa

4. BRAIN TUMORS: Karen Aboody, City of Hope, has built a stem cell bank to make her prospective attempt at destroying brain tumors widely available. Her techniques may also remove “solid tumors throughout the body”…” applicable to other deadly growths.

http://www.cirm.ca.gov/content/stem-cell-mediated-therapy-high-grade-glioma-toward-phase-i-ii-clinical-trineurological-diso

5. CANCER: Dennis Slamon, UCLA, points out that “ a minor population of cancer stem cells drives the growth of an entire tumor…” These trigger-like cells can bring back the cancer which appeared to be gone. Fortunately, says Slaymon, “our lead drug can inhibit the growth of cancer stem cells.”

http://www.cirm.ca.gov/content/therapeutic-opportunities-target-tumor-initiating-cells-solid-tumors

6. CANCER: Judith Shizuru, Stanford, hopes to “enable chemotherapy free transplants”, with the use of a selected antibody. The same technique might also save the lives of children born with an immune-system defect, Severe Combined Immune Deficiency (SCID), who often die before the age of two.

http://www.cirm.ca.gov/content/therapeutic-opportunities-target-tumor-initiating-cells-solid-tumors

7. CANCER: Antoni Ribas, UCLA, seeks to reprogram stem cells, hoping to “redirect the patient’s immune response to specifically attack the cancer….”

http://www.cirm.ca.gov/Grant/genetic-re-programming-stem-cells-fight-cancer-0

8. CRITICAL LIMB ISCHEMIA: John Laird, UC Davis, hopes to benefit two million Americans currently at risk of leg amputation or death. Since a key problem in this condition is low oxygen level in the affected limbs, Laird has shown that stem cells can “migrate into the areas of lowest oxygen…wrap around the damaged…blood vessels…and secrete (helpful) factors where needed most…” A stem cell hug of life!

http://www.cirm.ca.gov/Grant/phase-i-study-im-injection-vegf-producing-msc-treatment-critical-limb-ischemia

9. DIABETES: ViaCyte, Inc. is challenging diabetes, using embryonic stem cells to build “beta cells, which have been shown to cure experimental diabetes in mice and rats… could become the most significant stem cell-based medical treatment of the coming decade…”

http://www.cirm.ca.gov/content/cell-therapy-diabetes

10. HEART ATTACK: Rachel Smith, of Capricor, Inc., wants to use stem cells to turn heart attack scars back into healthy tissue. As scarring makes the next heart attack more likely, Smith’s method may save lives.

http://www.cirm.ca.gov/Grant/allogeneic-cardiac-derived-stem-cells-patients-following-a-myocardial-infarction

11. HEART ATTACK: Eduardo Marban of Cedars-Sinai Medical Center, says: “The adult human heart contains small numbers of cardiac stem cells that are able to partially repair the heart following a heart attack…we have developed a way to isolate these cells and grow them to large numbers…” Clusters of these cells could be injected into the heart– even in the middle of a heart attack.

http://www.cirm.ca.gov/content/autologous-cardiac-derived-cells-advanced-ischemic-cardiomyopathy

12. HEART FAILURE: Robert Robbins, Stanford, intends to use “embryonic stem cell-derived (heart cells) for patients with end stage heart failure…transplanting cells rather than a whole heart….”

http://www.cirm.ca.gov/Grant/human-embryonic-stem-cell-derived-cardiomyocytes-patients-with-end-stage-heart-failure-0

13. HIV/AIDS: Irving Chen, UCLA, believes that the process which can change the color of a flower (RNA interference) may “block the spread of HIV infection…”. Right now, surviving with AIDS means requires several dozen pills a day. But the Chen method could mean “a therapy that will require only a single treatment…”

http://www.cirm.ca.gov/content/hpsc-based-therapy-hiv-disease-using-rnai-ccr5

14. HIV/AIDS: John Zaia, City of Hope, may have found a way to duplicate a “cure” of an AIDS patient who received a bone marrow transplant with a mutation called delta-32. This mutation apparently blocks entry of the AIDS virus. It may be possible to alter a patient’s cells so that they can also block the virus.

http://www.cirm.ca.gov/content/therapeutic-opportunities-target-tumor-initiating-cells-solid-tumors

15. HUNTINGTON’S DISEASE: Vicki Wheelock, UC Davis, hopes to fight the fatal disease with stem cells as a delivery vehicle: bringing a nerve-growth factor called Brain Derived Neurotrophic Factor, (BDNF) to the at-risk nerve cells.

http://www.cirm.ca.gov/Grant/msc-engineered-produce-bdnf-treatment-huntingtons-disease-0

16. LEUKEMIA: Catriona Jamieson and Dennis Carson of UCSD are fighting an after-treatment problem with the deadly disease; it often leaves small amounts of leukemia stem cells still alive, to come back stronger later. The Carson team hopes to make anti-leukemia drugs available soon.

http://www.cirm.ca.gov/content/development-highly-active-anti-leukemia-stem-cell-therapy-halt

17. LEUKEMIA: Irv Weissman, Stanford. The body’s protective cells, macrophages, should “eat” the leukemia invaders—but they don’t. A marker cell called CD-47 on the leukemia cells acts like a “don’t eat me” sticker. But if the marker could be removed….

http://www.cirm.ca.gov/content/development-therapeutic-antibodies-targeting-human-acute-myeloid-leukemia-stem-cells

18. LOU GEHRIG’S DISEASE: Larry Goldstein, UCSD, hopes to prevent the progression of the fatal disease (amyotrophic lateral sclerosis, ALS, or Lou Gehrig’s Disease) by using astrocytes (nerve support cells) developed from embryonic stem cells.

http://www.cirm.ca.gov/content/stem-cell-derived-astrocyte-precursor-transplants-amyotrophic-lateral-sclerosis

19. LOU GEHRIG’S DISEASE: Clive Svendsen, Cedars-Sinai Medical Center, wants to use nerve “fertilizer” (Glial Derived Neurotrophic Factor, GDNF) to treat the deadly disease. Svendsen wants to use neural progenitor cells as “Trojan horses”, to carry the GDNF to the nerve cells, where it is needed.

http://www.cirm.ca.gov/Grant/progenitor-cells-secreting-gdnf-treatment-als

20. MUSCULAR DYSTROPHY: Stanley Nelson, UCLA, is tackling the devastating and muscle-wasting disease. Nelson’s technique brings repairs “directly inside each muscle cell”… and is “predicted to lessen the disease severity…”

http://www.cirm.ca.gov/Grant/combination-therapy-enhance-antisense-mediated-exon-skipping-duchenne-muscular-dystrophy-0

21. OSTEOPOROSIS: Nancy Lane, UC Davis, wants to strengthen the bones of the elderly, and thereby lessen the number of bone fractures they suffer. In osteoporosis, bones can grow almost transparently thin and accordingly weak. Lane has developed a small molecule that directs stem cells to grow the skeleton stronger.

http://www.cirm.ca.gov/Grant/treatment-osteoporosis-with-endogenous-mesenchymal-stem-cells

22. SICKLE CELL DISEASE: Donald Kohn, UCLA, offers a stem cell therapy for the agonizing and often fatal disease. The blood cells change shape into a c-shape like a sickle, said to cause pain like broken glass in the veins. Kohn’s approach will transplant “adult cells that are genetically corrected by…a gene that blocks sickling…”

http://www.cirm.ca.gov/content/stem-cell-gene-therapy-sickle-cell-disease-0

23. SKIN DISEASE: Alfred Lane, Stanford, hopes to use induced Pluripotent Stem Cells (iPSC)s to combat a hideous disease, dystrophic epidermolysis bullosa, in which the skin literally rips apart. His method may treat other skin disorders as well.

http://www.cirm.ca.gov/content/ips-cell-based-treatment-dystrophic-epidermolysis-bullosa

24. SPINAL CORD INJURY: Nobuko Uchida, Stem Cells Inc., wants to transplant neural stem cells into the spine to ease chronic cervical spinal cord injury. His method has restored motion in animal models, and “could potentially reverse paralysis and improve the patient’s quality of life.” For paralyzed people, even a small improvement is hugely positive: perhaps the difference between needing an attendant and not.

http://www.cirm.ca.gov/Grant/neural-stem-cell-transplantation-chronic-cervical-spinal-cord-injury

25. STROKE: Gary Steinberg, Stanford, calls stroke “the number one cause of disability, the second leading cause of dementia, and the third leading cause of death in adults…” His team will use embryonic stem cells– to make neural stem cells– to “augment the body’s natural repair process after stroke.”

http://www.cirm.ca.gov/content/embryonic-derived-neural-stem-cells-treatment-motor-sequelae-following-sub-cortical-stroke

Major Changes Accepted at California Stem Cell Program

By Don C. Reed

As a long-term patient advocate, I have attended probably more public meetings of the California stem cell program than anybody, staff included; and I have never ceased to be amazed at the dedication of all concerned.

The most recent meeting was a response to what I consider a grossly misguided study of our program by the Institute of Medicine. Google it for the full 166 page.

The study maintained the California Institute of Regenerative Medicine (CIRM) was rife with potential conflicts of interest, including, according to their view, patient advocates: people with a medical condition, or their family.

“…The committee believes that personal conflicts of interest arising from one’s own or a family member’s affliction with a particular disease…can create bias for board members..” ibid–section 3, page 14

Patient advocates are the people who organized, led, fought for, and supported Proposition 71, the citizens’ initiative which led to the California Institute of Regenerative Medicine. Bob Klein who inspired the program has a son with type one diabetes. My son Roman Reed is paralyzed from the shoulders down. Patient advocates stood on street corners for nearly a year gathering signatures to get the measure on the ballot. Without us, there would be no three billion dollar stem cell program.

Yet now, having done the work, we were not to be part of the decision-making?

Pioneering stem cell scientist Dr. Jeanne Loring said it best, in a letter she asked me to read into the public record:

“Patient advocates are extremely valuable to us researchers.

“With my first CIRM grant, I started meeting patient advocates, and now I can’t imagine pursuing a disease-related research project without them…They are wonderful sources of knowledge: Jeff Sheehy taught me about HIV/AIDS and patient activism, I learned about Parkinson’s disease from Joan Samuelson, autism from John Shestack, David Serrano-Sewell and Diane Winokur have educated me about MS and ALS.

“Advocacy makes CIRM-funded research breathtakingly relevant and uniquely powerful to change the course of medicine.”— Jeanne Loring, Ph.D. ,Professor and Director of the Center for Regenerative Medicine at the Scripps Research Institute in La Jolla, CA.

Even so, those three words, “conflict of interest”, are huge, whether applied to patient advocates, or to the board of directors: the Independent Citizens Oversight Committee (ICOC).

Virtually every critic of the program alleges conflicts of interest, noting (correctly) that many of the institutions which get research money are also on the ICOC. For example, the University of California system has many researchers; it is natural for it to be represented on the board—where else should the money go, if not to where the researchers are? And the members are not allowed to vote on anything which might benefit themselves.

Yet, like Caesar’s wife, CIRM must be above suspicion: held to the highest standards.

The Board listened to the IOM: and offered changes to address the criticism.

From the official CIRM statement:

“One of the big issues raised by the IOM report was that our current governing structure created a perception of conflicts of interest in how we fund research,” says Chairman Jonathan Thomas. “While no one has found any actual conflicts, these changes directly address the broad public perception.”

Translation: no actual conflicts of interest were found, only the possibility that some might develop.

This fit with earlier studies. Both the California legislature and the State Controller’s office had found no conflicts of interest in the program.

In fact, the CIRM’s: “conflict of interest rules are modeled on, but exceed, the standards established by the National Institutes of Health…”
http://cirm.ca.gov/files/meetings/pdf/2013/012313_item_5.PDF

But perceptions, accurate or not, can be damaging. Chairman Thomas believed the board must answer the issue, or lose credit with the public. He offered a draconian solution:

“By having board members who belong to institutions that can get CIRM money abstain from all votes on funding we take even the perception of conflict of interest out of the picture….”

Thirteen members of the board of directors just had their right to vote taken away.

From now on, institutions which could receive funding from the program will no longer be able to vote–at all.

How significant were the changes? In a published e-mail to Chairman Thomas, the study’s leader, Harold Shapiro, former President of Princeton, commended the stem cell agency for its response, calling it:

“…very thoughtful and significant…will serve the long term interests of the citizens of California and the field of regenerative medicine. … dealing with financial conflicts of interest, enhancing the credibility and integrity of the scientific review process…”

With an essentially unanimous vote, (one abstention) the board voted to approve the changes (subject to a month’s public comment) for a trial period of one year. When that testing phase is done, the changes will either become permanent, or be altered.

And the patient advocates? Their vote was taken away on the Grants Working Group, which recommends research projects to the board—but patients on the board will still vote—and our right to participate in public comment has not been infringed.

“These are big potential changes, and important ones,” said Jonathan Thomas, JD, PhD, Chair of the Board. “We are proposing them to address the concerns of the IOM, and to demonstrate how seriously we take the recommendations detailed in their report….”

All change is painful, more so when its necessity is questionable.

But there can be no debate that the board took the high road. Even those who would be losing their right to vote still approved the changes; their belief in the program and the importance of its public perception was more important than their personal authority.

For the California stem cell program, the conflict of interest issue should officially be declared null and void.

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