CUB SCOUTS AGAINST A FOREST FIRE? Despite Odds, Supporters of Paralysis Cure Research Can Win
By Don C. Reed
On May 27th, in Sacramento, California, there will be a legislative forest fire. In the Appropriations committee, dozens of good bills will be considered. Most will die.
Assembly Bill 190, (Wieckowski, D-Fremont) our bill to fight paralysis– must survive.
But first, a question about a real-life forest fire. If you were an 8-year-old cub scout, and you were out in the wilderness and saw a forest fire approaching like a wall of fire, and there was no way to out run it—what could you do to survive? The answer might surprise you. (No, you should not lie down in a nearby stream; that would just boil you alive.) I will tell you later what two brave cub scouts actually did.
Back to the fight against paralysis. Wednesday my paralyzed son Roman Reed and I drove to Sacramento, to meet legislative aides of members of Appropriations committee. We were there to support Assembly Bill 190: a $3 fine for bad driving, money to go to the Roman Reed Spinal Cord Injury Research Act.
How are we doing? To the surprise of many, we passed our first committee meeting, public safety, 4-2. Now we face a larger and more difficult committee, the 17-member Appropriations.
If we can pull off an against-the-odds upset victory here, it will be because of the groups and individuals who have honored AB 190 with their support.
At the bottom of this message I have posted a sampling of our friends.
Glance through this list, and notice where they come from: Texas, Florida, New Jersey, China, Arizona, New York, California, Washington DC, Japan, across America and beyond: wherever people work to bring a cure for paralysis, there are friends for AB 190.
You want to help us too? Please do! All we need is a quick email (or phone call) of support. Nothing fancy is required.
Here is a SAMPLE LETTER. Important: on the Intro line of your email, put: AB 190 APPROPRIATIONS
Inside start off with your name, street address, zip, telephone, so they know you are a real person.
RE: Support for Assembly Bill 190 (Wieckowski, D-Fremont)
Dear (NAME OF ASSEMBLYPERSON):
Assembly Bill 190 would charge bad drivers a $3 add-on fine, all proceeds to fund the Roman Reed Spinal Cord Injury Research Act, which is administered through the UC System.
As car crash is the number one cause of spinal cord injury, it is only fair that reckless drivers should help pay for the misery they cause.
“Roman’s Law” has been a huge success for California in every way, including financial. It is a “money magnet” because it brought in more than four times more money than it cost the state . In taxpayer dollars, it spent $14 million over the ten years of its existence—and attracted $64 million in add-on grants from out of state, new money for California.
Paralysis is wide-spread, with an estimated 650,000 Calfornians afflicted. Nationally, approximately 5.6 million Americans suffer some degree of paralysis. Because paralysis sufferers may face lifetime medical bills of $3-5 million dollars each, they are almost always forced onto the Medicare and/or Medi-Cal rolls, at enormous cost to the taxpayers.
In the past, the program funded stem cell research in the past, including what became the world’s first human trials on newly paralyzed people, the famous Geron trials. However, stem cells are not our main focus, now that California has Proposition 71’s stem cell program in place. Since 2008, we have funded no stem cell research at all.
We focus mainly on the “everything else”, problems and possibilities of a condition long considered impossible to cure. For instance, when an injury happens, the damage to the spine may be a small hole—but that wound will actually grow inside the spine, a “secondary injury” as the body’s immune system fights back, and increases the size of the injury, and its severity. A person entering the hospital still able to use his hands could lose that ability. There may be a way to limit that secondary injury, by controlling the immune response.
Other targets for investigation include chronic pain (some paralytics live in constant agony), bowel and bladder control, life-death fluctuations in blood pressure, and much more.
Even the smallest return of function is vital; when my son recovered the use of the triceps muscles of his arms, that allowed him to drive an adapted van—instead of having to rely on a paid attendant.
AB 190 is the hope of healing: a zero-tax way to fund research for cure. (for more info, go to my website, www.stemcellbattles.com)
Please support AB 190.
(If you want to mention a family member or friend who suffers any form of paralysis, that is helpful, but not mandatory.)
Thank you.
YOUR NAME
Now, remember those cubscouts, faced with a roaring forest fire? They dug two little graves for themselves, climbed inside, put their shirts over their faces, and pulled the dirt back over them, as best they could. The forest fire roared over them. The sound was deafening, the heat almost unbearable. But when the blaze had passed, two little kids sat up. The sweat from their bodies turned the dirt to mud, they both had mild sunburn from the heat—but they survived.
And so may we, if we are equally determined and creative.
Here are the members of the committee: write or call at least the top two, the chair and vice chair.
Felipe Fuentes – Chair Dem-39 (916) 319-2039
Assemblymember.Fuentes@assembly.ca.gov
Diane L. Harkey – Vice Chair Rep-73 916) 319-2073
Assemblymember.Harkey@assembly.ca.gov
Charles M. Calderon Dem-58 (916) 319-2058
Assemblymember.Calderon@assembly.ca.gov
Mike Gatto Dem-43 (916) 319-2043
Assemblymember.Gatto@assembly.ca.gov
Donald P. Wagner, Rep-70 (916) 319-2070
Assemblymember.Wagner@assembly.ca.gov
Steven Bradford Dem-51 (916) 319-2051
Assemblymember.Bradford@assembly.ca.gov
Bob Blumenfield Dem-40 (916) 319-2040
Assemblymember.Blumenfield@assembly.ca.gov
Isadore Hall III Dem-52 (916) 319-2052
Assemblymember.Hall@assembly.ca.gov
Jim Nielsen Rep-2 (916) 319-2002
Assemblymember.Nielsen@assembly.ca.gov
Chris Norby Rep-72 (916) 319-2072
Assemblymember.Norby@assembly.ca.gov
Tim Donnelly Rep-59 (916) 319-2059
Assemblymember.Donnelly@assembly.ca.gov
Jose Solorio Dem-69 (916) 319-2069
Assemblymember.Solorio@assembly.ca.gov
Ricardo Lara Dem-50 (916) 319-2050
Assemblymember.Lara@assembly.ca.gov
Holly J. Mitchell Dem-47 (916) 319-2047
Assemblymember.Mitchell@assembly.ca.gov
Jerry Hill Dem-19 (916) 319-2019
Assemblymember.Hill@assembly.ca.gov
Mike Davis Dem-48 (916) 319-2048
Assemblymember.Davis@assembly.ca.gov
Nora Campos Dem-23 (916) 319-2023
Assemblymember.Campos@assembly.ca.gov
Who has helped us already? Below, in alphabetical order, are just a few of the amazing friends who have already endorsed AB 190. (I hope they will also call or email the chair and vice-chair of this committee!)
Texans for Stem Cell Research
David L. Bales, Chairman
Jim Bennett
Spinal Cord Injury Research Foundation, Rutgers University, New Jersey
Paul Berg (Nobel Laureate)
Stanford University School of Medicine
Jeffrey A. Bluestone, Ph.D, Executive Vice Chancellor and Provost
University of California, San Francisco
Rayilyn Brown
Arizona Chapter National Parkinson Foundation
Nancy Brackett, Ph.D.
U of Miami School of Medicine
Nina Brown, Founding Boardmember, Lorraine Chammah, President
Texans for Advancement of Medical Research
California Healthcare Institute
Susan Chandler
Treasurer, California Disability Rights Organization
Stemcyte
President Calvin Cole
California Chiropractic Association
Kassie Donoghue, DC, Government Affairs Chair
W. Dalton Dietrich, Ph.D.
Miami Project to Cure Paralysis
John Dutra, California assemblymember (D-Fremont, retired)
Author, Roman Reed Spinal Cord Injury Research Act of 1999
V. Reggie Edgerton, UCLA Professor
Brain Research Institute
Brooke Ellison
(Christopher Reeve’s last project was directing a movie about Brooke)
Jeannie Fontana
CEO SALSa, Inc. Solutions for ALS
Eric Fingerhut, Chancellor
University System of Ohio
University of California
Karen French, Associate Director, Legislative Affair
Leeza Gibbons
Leeza’s Place (Alzheimer’s)
Lawrence Goldstein
Director, UCSD Stem Cell Program
Hans Keirstead, (researcher whose Geron work now in world’s first clinical trials stem cells)
UC-Irvine Professor, Chair, Scientific Advisory Board, California Stem Cell, Inc.
Stephanie A. Kolakowsky-Hayner, PhD
Director of Rehabilitation Research, Santa Clara Valley Medical Center
Suzy Kim, Medical Director, SCI Acute Care
UCI Medical Center
Robert N. Klein, Founder,
Proposition 71, the Californians for Stem Cell Research and Cures Initiative
Dena Ladd
Executive Director, Missouri Coalition for Lifesaving Cures
Sherry Lansing
Chair, Sherry Lansing Foundation
Academy Award Winner Jean Hersholt Humanitarian Award
Stem Cells Inc.
Martin McGlynn, President & CEO
Karen Miner
Chair, Research for Cure
Ed Monuki
Associate Professor, UC Irvine
Rania Nasis
General Manager, CA Stem Cell, Inc.
Richard Patterson, M.D.
Santa Clara Valley Medical Center
Renee A Reijo Pera, Ph.D.
Director of Reproductive and Stem Cell Biology Division, Stanford University
Dan Perry, President, CEO
Alliance for Aging Research, Washington, CD
Claire Pomeroy,
Chief Executive Officer, UC Davis Health Department
Brock Reeve
Executive Director, Harvard Stem Cell Institute
Bill Remak
Chairman, California Hepatitis Task Force
Duane Roth
CEO, CONNECT
Rose Marie Salerno
VA Palo Alto Health Care System
Lori Sames
Executive Director, Hannah’s Hope Fund
Bernie Siegel, founder and chair:
Stem Cell Action Coalition
Genetics Policy Institute
Marilyn Smith
Executive Director, Unite 2 Fight Paralysis
Michael Sofroniew, M.D.
Professor, UCLA
Christopher & Dana Reeve Foundation
Peter T. Wilderotter, President & CEO
Shinya Yamanaka, Ph.D (inventor of induced Pluripotent Stem cells)
Director, Center for iPS Cell Research and Applications
Kyoto University
Fanyi Zheng, Professor and Associate Director
Shanghai Stem Cell Institute, Jiao Tong University School of Medicine, China
Jerry Zucker (movie director, Ghost, Airplane, Naked Gun)
Zucker Productions, Founding board member, CURESNOW