Skip to main content

Friday's victory in the California Assembly puts us a giant step closer to a million dollars a year for paralysis cure research.

We passed the Appropriations Committee, but now we must pass the full Assembly-- would you consider sending an email or two? I promise it will not be difficult!

CONTACT REPUBLICANS—Help California Pass Paralysis Cure Research Bill

By Don C. Reed

Great news for paralysis research! On Friday, California’s Roman Reed Spinal Cord Injury Research Act passed the Appropriations Committee—a huge step closer to one million dollars a year for paralysis cure research!

But we have only a couple of days before the full Assembly votes.

That crucial vote will almost certainly come this week, perhaps Wednesday or Thursday.

Needing a 2/3 majority, our hope rests with a bipartisan success, especially our Republican allies.

Fortunately, Republican Diane Harkey is the co-author of our bill. Ms. Harkey is the kind of pro-biomed Republican that California needs, and her leadership is crucial.

Patient advocates must help. Your quick email could make the difference. At the bottom of this page is a letter I wrote, please feel free to use any part of it.

All we need is a statement of support. Something like this would be very helpful

 “I strongly support AB 714, to put one million dollars into the Roman Reed Spinal Cord Injury Research Act, attempting to cure paralysis, which affects 5.6 million Americans.”  

Below are emails of the  Republicans of the California Assembly.   If you only have time to send one email, please send it to Minority Leader Connie Conway (R-Tulare).  You can reach her at:    assemblymember.conway@assembly.ca.gov.

If you have time, send more, and feel free to use the same letter for each one;  just change the name and cut and paste the email address below. (Tip: be sure and put your phone number in the letter at the top, so they know  you are not a mechanical e-mailer.)
AD 1: Brian Dahle    assemblymember.dahle@assembly.ca.gov
AD 3: Dan Logue    assemblymember.logue@assembly.ca.gov
•    AD 5: Frank Bigelow   assemblymember.bigelow@assembly.ca.gov
•    AD 6: Beth Gaines   assemblymember.gaines@assembly.ca.gov
•    AD 12: Kristin Olsen   assemblymember.olsen@assembly.ca.gov
•    AD 23: Jim Patterson   assemblymember.patterson@assembly.ca.gov
•    AD 26: Connie Conway (Minority Leader) assemblymember.conway@assembly.ca.gov
•    AD 33: Tim Donnelly   assemblymember.donnelly@assembly.ca.gov
•    AD 34: Shannon Grove   assemblymember.grove@assembly.ca.gov
•    AD 35: Katcho Achadjian   assemblymember.achadian@assembly.ca.gov
•    AD 38: Scott Wilk    assemblymember.wilk@assembly.ca.gov
•    AD 40: Mike Morrell   assemblymember.morrell@assembly.ca.gov
•    AD 42: Brian Nestande   assemblymember.nestande@assembly.ca.gov
•    AD 44: Jeff Gorell    assemblymember.nestande@assembly.ca.gov
•    AD 55: Curt Hagman   assemblymember.hagman@assembly.ca.gov
•    AD 60: Eric Linder   assemblymember.linder@assembly.ca.gov
•    AD 67: Melissa Melendez   assemblymember.melindez@assembly.ca.gov
•    AD 68: Don Wagner   assemblymember.wagner@assembly.ca.gov
•    AD 71: Brian Jones   assemblymember.jones@assembly.ca.gov
•    AD 72: Travis Allen   assemblymember.allen@assembly.ca.gov
•    AD 73: Diane Harkey   assemblymember.harkey@assembly.ca.gov
•    AD 74: Allan Mansoor   assemblymember.mansoor@assembly.ca.gov
•    AD 75: Marie Waldron    assemblymember.waldron@assembly.ca.gov
•    AD 76: Rocky Chavez    assemblymember.chavez@assembly.ca.gov
•    AD 77: Brian Maienschein   assemblymember.maienschein@assembly.ca.gov

Below is my letter to Minority Leader Conway:

Dear Minority Leader Conway:

My son Roman Reed broke his neck playing college football, September 10th, 1994, and became paralyzed from the shoulders down.

Please support AB 714: which just passed the Appropriations Committee. AB 714  will restore $1 million annual funding for the Roman Reed Spinal Cord Injury Research Act, which funding was removed two years ago for budget reasons.

We are honored that Diane Harkey (AD 73) co-authored our bill. Her leadership represents for me the pro-biomed leadership our state requires.

The costs of paralysis are staggering. If divided equally, paralysis could cost every Californian as much as $131.57 in annual medical bills.

Five point six million Americans are paralyzed. That is 1.9 per cent of the population—almost one in fifty. From our state population of 38 million, we can estimate 760,000 paralyzed people.

Here are three major causes of paralysis, with their lifetime medical costs.  

1. Traumatic brain injury costs roughly $4.2 million for a patient over his or lifetime.

2. Multiple sclerosis sufferers face lifetime bills of about $1.2 million each.

3. Spinal cord injury costs can run as high as $5 million dollars per person.

These are lifetime figures. To get a rough idea of the financial nightmare,
Assume  a life span of 70 years, and (and a low estimate of medical expenses, just half a million dollars each) caring for 760,000 paralyzed citizens may cost California $5 billion a year— or an average cost of  $131.57 per Californian.

Many paralyzed Californians turn to government for help, which means taxpayers carry the burden.

Is not cure a better way? Even a partial cure is hugely helpful.

As one expert put it:  “even a modest treatment… could save $770,000 over the lifetime of one patient. … to impact quality-of-life and independence of (the) patients, and reduce the shared costs of health care.”
--Aileen Anderson, Director, Christopher and Dana Reeve Foundation SCI Core Lab

Example: when my son Roman Reed was first paralyzed, he had no triceps function. He could not straighten out his arms. But with major rehabilitation and the most advanced medication available at the time, his arm control returned. Today Roman can bench press 225 pounds—and drive an adapted vehicle—instead of having to hire an attendant.

Research for advanced medication and directed exercise are key ingredients of the Roman Reed Spinal Cord Injury Research Act—which AB 714 would fund.

Until its funding was removed, “Roman’s Law” was an overwhelming success in all respects, including financial. How many programs return five times their investment?  

Since it began in 2000, the Roman Reed Spinal Cord Injury Research Act has spent a total of $15.1 million. This funded small “seed grants” for California scientists. When their work succeeded, the Federal government provided an additional $84 million in matching grants—new money for the California.  

With 300 scientists having worked on RR grants, and a dedicated laboratory at UC Irvine, the research advanced biomedicine, a foundational industry in our state.  

Because the spine is central to neurological disorders, spinal cord research applies to all forms of paralysis: multiple sclerosis, stroke, traumatic brain injury, spinal muscular atrophy, ALS (Lou Gehrig’s disease), Alzheimer’s, and more. The knowledge is shared: 175 peer-reviewed published scientific papers are each a piece of the puzzle of cure, what works and what doesn’t: a small library of paralysis information.

California’s investment has brought America closer to cure. Our research was featured on TV’s SIXTY MINUTES, the first use of President George W. Bush’s approved stem cell lines, the famous paralyzed rats which walked again.

But most of our work has nothing to do with stem cells.

In addition to a multi-pronged approach to heal chronic paralysis, we focus on practicalities like lowering the costs of physical therapy, and reducing blood pressure irregularities, such as killed the great Christopher Reeve, whose loss we mourn.

Reeve supported the Roman Reed Spinal Cord Research Act, saying: “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 guides our way. California has taken up the torch. We must not let that flame die out.

Please support Assembly Bill 714: restore funding to the Roman Reed Spinal Cord Injury Research Act: your legislative legacy.

For financial as well as humanitarian reasons, help us end paralysis in our lifetime. It is the fiscally responsible way to lower medical costs.

Thank you,

Don C. Reed

EMAIL TO A FRIEND X
Your Email has been sent.
You must add at least one tag to this diary before publishing it.

Add keywords that describe this diary. Separate multiple keywords with commas.
Tagging tips - Search For Tags - Browse For Tags

?

More Tagging tips:

A tag is a way to search for this diary. If someone is searching for "Barack Obama," is this a diary they'd be trying to find?

Use a person's full name, without any title. Senator Obama may become President Obama, and Michelle Obama might run for office.

If your diary covers an election or elected official, use election tags, which are generally the state abbreviation followed by the office. CA-01 is the first district House seat. CA-Sen covers both senate races. NY-GOV covers the New York governor's race.

Tags do not compound: that is, "education reform" is a completely different tag from "education". A tag like "reform" alone is probably not meaningful.

Consider if one or more of these tags fits your diary: Civil Rights, Community, Congress, Culture, Economy, Education, Elections, Energy, Environment, Health Care, International, Labor, Law, Media, Meta, National Security, Science, Transportation, or White House. If your diary is specific to a state, consider adding the state (California, Texas, etc). Keep in mind, though, that there are many wonderful and important diaries that don't fit in any of these tags. Don't worry if yours doesn't.

You can add a private note to this diary when hotlisting it:
Are you sure you want to remove this diary from your hotlist?
Are you sure you want to remove your recommendation? You can only recommend a diary once, so you will not be able to re-recommend it afterwards.
Rescue this diary, and add a note:
Are you sure you want to remove this diary from Rescue?
Choose where to republish this diary. The diary will be added to the queue for that group. Publish it from the queue to make it appear.

You must be a member of a group to use this feature.

Add a quick update to your diary without changing the diary itself:
Are you sure you want to remove this diary?
(The diary will be removed from the site and returned to your drafts for further editing.)
(The diary will be removed.)
Are you sure you want to save these changes to the published diary?

Comment Preferences

Subscribe or Donate to support Daily Kos.

Click here for the mobile view of the site