Roman Reed's request for support

I have been trying to offer the Reed's as much support as possible in winning new funding for the Roman Reed law to cure paralysis and Roman has sent a long a special request.

The Reeds appreciate all our help in sending our emails and faxes to support this law for a million a year in paralysis cure spending. Our work has helped in getting it through the California Assembley 69 to 3 and most recently 9 to nil in the Senate's Health Committee. They also appreciate all our great comments on the card we're working on to to present the Governor when the bill is ready for his signature (he vetoed it last time).

Roman is now asking for letters. Yes, the real paper and pen ones (well, the signature part anyhow). Roman's email with all the information follows below and he believes that a proper letter written to the California Secretary of Health will go along way in making sure the bill is signed this time.

So get out your pens and start writing!

Here's the information below.
________________________________
LETTER NEEDED FOR PARALYSIS RESEARCH BILL
Dear Friend of Research to Cure Paralysis:

May I ask you to write a brief letter to Diana Dooley, California’s Secretary of Health, in support of a bill to fund paralysis cure research ?

Assembly Bill 714 (Wieckowski, D-Fremont) would provide one million dollars a year for research to cure paralysis. The bill is moving ahead strongly, having passed the Assembly with overwhelming bipartisan support (68-3) and its first Senate hearing (Senate Health) with a 9-0 vote of approval.

The bill would restore funding for the Roman Reed Spinal Cord Injury Research Act. Although a highly successful program, renewed twice in 2005 and 2010, the second renewal came with no funding. The economy was facing difficult times, and funding was removed for budgetary reasons. We are trying to put it back.*

Last year our bill went all through the Assembly and Senate, but was vetoed by Governor Jerry Brown. He did not approve of our funding mechanism (a $1 traffic ticket fee increase) and said the program should be financed by the General Fund.

We have naturally taken his advice, and this year, if AB 714 passes,*California’s paralysis research will be paid for by the General Fund.
*
But we dare not leave anything to chance.

Our best hope to convince Governor Brown is through the Secretary of Health, Diana Dooley, whose opinion the Governor highly respects. We need to provide Secretary Dooley with letters of support.

Please send them by ground mail, on your group’s letterhead, with an email copy to me, please.

The Secretary’s address is:
The Honorable Diana S. Dooley,
Secretary, California Health and Human Services,
1600 Ninth Street, Room 460,Sacramento, CA 95814

Below are some information points which might be useful.***

Support for Assembly Bill 714 (Wieckowski, D-Fremont), spinal cord injury research

AB 714 would restore funding ($1 million annually) to the Roman Reed Spinal Cord Injury Research Act, (RR Act), named after a paralyzed Californian, Roman Reed.
*
Although the RR Act was successful (renewed twice by near unanimous votes), in 2010 California faced difficult times, and the funding for the program was removed. For both practical and humanitarian reasons, it should be restored.

Financially, the RR Act has made an actual profit for California. Over its ten year history, it spent $15 million of the taxpayer’s money—and attracted $84 million*in add-on grants from the National Institutes of Health (NIH) and other sources—new revenues for the state.

It has provided jobs for over 300 scientists and lab technicians, and is supported by the California Health Institute, the state’s largest biomedical organization, as well as other biomed organizations like Bay Bio and Connect.

AB 714 has strong bi-partisan support, having already passed the full body of the Assembly (68-3) and the Senate Health Committee, 9-0.

With new scientists having difficulty obtaining grants (the average age for receiving a first NIH grant is now 44) the program answers a real need. A scientist succeeding with a $20,000 or $50,000 grant from the Roman Reed Act can then approach larger agencies with a proven track record, that all-important initial data. Many young scientists have done exactly that, as can be verified by a glance through our key document, which can be downloaded at:

http://www.reeve.uci.edu/roman-reed-...ch-grants.html

While the overall program is administered through the UC system, the Roman Reed Core Laboratory is run by Dr. Oswald Steward at the Reeve-Irvine Research Center at UC Irvine. Here scientists can learn how to run a spinal cord injury research experiment, with access to the latest equipment, including a half-million dollar microscope. Here too, patients and advocates can meet with scientists and discuss mutual concerns and suggestions. Twice-annual “Meet the Scientists” nights are well-attended and productive.

RR Act researchers have produced 175 published scientific papers, each a piece of the puzzle of cure.

The problem is gigantic. America’s 5.6 million paralyzed children and adults (nearly 2% of the population, roughly one in fifty) are currently told there is no hope they will get well: ever.

The financial burdens are staggering. The medical costs of just the first year of a paralyzed person’s care? Roughly one million dollars, the price of the entire paralysis program.

Lifetime medical expenses for a paralyzed individual can reach $3-5 million, forcing many paralytics onto governmental relief. One estimate of the hidden costs of paralysis adds up to $5 billion a year for California alone—the equivalent of $131.57 from every child and adult in the state. (based on 760,000 paralyzed Californians, and a conservative cost assessment of half a million dollars lifetime medical costs, over a 70 year life span.)

On a positive note, due to the centrality of the spinal cord, research on paralysis offers benefits to all nerve-related disorders: traumatic brain injury, Alzheimer’s, ALS, Parkinson’s, multiple sclerosis, spina bifida, muscular dystrophy, spinal muscular atrophy, and more.

One of the projects California funded involved the first use of President Bush’s approved embryonic stem cells, and was so spectacularly successful it was featured on the 60 MINUTES television show. But only 4 of 129 projects involved the special cells; most of the work funded is “the everything else” which must be done for therapy and quality of life issues-- everything from skin sores which can rot the flesh down to the bone, to potentially fatal blood pressure irregularities, to bowel, bladder and reproductive problems, chronic pain, the need for low-cost rehabilitation methods—the program takes on many challenges.

One key component is the need for advanced (and less expensive) rehabilitation therapy. For instance, you may have seen paralyzed Superman Christopher Reeve being hoisted over a treadmill, and having his feet moved by attendants. This is not cheap. But the RR Act has been developing ways to use robotic shoes to move the feet, so the patient can do his/her strenuous workouts in safety, and without the need for as many attendants.

Even the smallest progress can mean a major improvement in patient quality of life. For example, when Roman Reed regained triceps muscle function on the backs of his arms, that allowed him to drive, instead of needing a paid attendant. Such cost savings can be astonishing.

Do you have the right to question Rick Hansen?

I have posted this blog and also sent it to a Mr. Cam Tait from the Edmonton Journal who runs a blog called Tait Talk where the two blog posts I mention below are published. I've asked to also be a guest blogger offering a counter argument from someone who has dealt with the Rick Hansen foundation for a number of years.

I also urge you to make your own comments directly on the blog posts in question by following the links below.

_____________

I have spent two years organising members of the spinal injured community to seek answers from the Rick Hansen Foundation about their real spending on a cure for spinal cord injury, and especially chronic spinal cord injury, and we have never ever been provided with this figure.

We asked about future plans including projects and spending, and were never answered with any numbers. When you can't get an answer to a simple question from an organisation which raises funds for "a world without paralysis after spinal cord injury" people really start to wonder about the financial stewardship of public funds and donations.

I don't think any of us were surprised after reading David Baines' story in the Vancouver Sun pointing out an $8.1 million deficit (at the end of their 2012 financial year), gratuitous self-promotion, and Mr. Hansen's own bloated salary.

What I was surprised by was two blogs written by guest bloggers on Tait Talk run by Cam Tait of the Edmonton Journal.

The first blogger, Ms. Marie Renaud Martin, almost knocked me out of my chair when she talked about Hansen falling short of his fundraising goals.

Falling "short" is one of the biggest understatements I've heard in a long time. They spent 17 to 19 million with a goal of raising 250 million but in the end only 84 million was raised. Well, you may say that they more than quadrupled their initial outlay, but then if you look at this 84 million, you start to see that most of it was simply a renewal of existing funding. In fact, RHF's revenues did not see any significant change pre and post 25th anniversary spending, but instead they are now saddled with a deficit.

So how does Ms. Renaud Martin defend this? She says, "So what?"

Well, Ms. Renaud Martin is very generous in her forgiveness because she states, "He has given his adult life to raising awareness." And then goes on to disparage Baines' article by questioning how much positive impact he has had on the world.

I myself say; so what?

How does this let Rick Hansen get off for his troubling financial stewardship? How much money is he allowed to be off because he is a good guy? I would love Ms. Renaud Martin to supply us with a figure. To her, Rick Hansen's salary is of no concern, so again I would like Ms. Renaud Martin to offer us a salary figure that she would consider to be too high. In fact, Rick Hansen is paid at least $50,000 more than the highest paid charity executive in British Columbia while all other BC charities paid less than $300,000.

The second post written by Ron Plant is even more shocking.

First he questions Baines' motive in writing the article as if there was some deep dark reason for writing the story in the first place, even though Mr. Plant doesn't even suggest what that motive would be. Well, Mr. Plant, that's what investigative reporters do. Should he have written another media/Rick Hansen love fest piece?

But what is most shocking is that Mr. Plant questions Baines' and even your own right to ask for full transparency from this organisation which is funded by tax dollars and private donations.

He asks, "What business is it of David Baines, how the Rick Hansen Foundation is run, or what compensation Rick Hansen receives?" And then goes on to say that Mr. Hansen does not owe the public any explanation.

Wow! Does he know what he saying? That would be like arguing that the current Senate spending scandal has nothing to do with the average taxpayer. Again, Mr. Plant gives Hansen a pass because, "Rick Hansen is a man who has made huge strides in affecting public perception of persons with disabilities." I'm sure that we could get a few people to say good things about the current Prime Minister and then I guess Mr. Plant wouldn't be bothered if Stephen Harper raised his salary to 400 thousand a year.

Both these writers offer no facts, just emotion. They remind me of those who questioned our right to ask for financial information about cure spending. The arguments were the same. Because they had no concrete reasons to challenge our campaign questions for financial transparency, they appealed to simple emotion. In fact, Rick Hansen himself, when asked our questions face to face at a conference, challenged our right to question by basically asking us how much money we have raised. Mr. Hansen and both of the writers forget that the money doesn't spring from some Rick Hansen well, but comes from me and you through taxes and donations.

We all have a right to ask for information about OUR money and money raised in cure's name, and we should never allow emotion to overrule our minds and do what is right when it comes to both money and a cure for spinal cord injury.

To read David Baines’ full article, please click here.

To read a summary with charts of Mr. Baines’ information, please click here.

Once again, I invite you to make comments directly on Ms. Marie Renaud Martin and Ron Plant’s blog posts. Let them know that their thinking is out of line with the rest of society.

Questionable Hansen Foundation spending exposed - Vancouver Sun

Read the Vancouver Sun Article -
Behind the Rick Hansen Foundation

I read the article with great sadness.

Even though many of us knew that there was waste, I don't think any of us imagined the extent of it.

I wish that I could feel content that our position was vindicated; that we weren't just angry cripples who were pissed off at Rick Hansen because we were paralysed, but saddened is the only emotion in my heart. Not just by the waste of money, but also because this kind of scandalous spending kills hope.

We spent a lot of time asking for transparency on cure funding, and I guess when they couldn't do that, alarm bells did sound in many of our heads. Was it because they simply weren't spending on a cure for chronic spinal cord injury, or was it just sheer arrogance on their part by refusing to share data they felt we had no right to ask for? We'll never know for sure, but this article clearly makes it look like it was both.

Still, we took the high road and didn't attack Hansen personally, we kept our eyes on the ball about chronic cure spending and regeneration. Our goal was not to discredit RHF or void Rick Hansen's contributions, but to make make sure that money was actually being spent on "a world without paralysis after spinal cord injury".

Even so, we were still castigated. We were told that we would hurt RHF's ability to raise donations and now ironically, it is RHF by their own hand which will kill off donations and make us suffer through a loss of research dollars for all organisations as stories like this hurt everyone. It is Rick Hansen, who had done so much, who has discredited himself and if he refuses to change will end voiding his own legacy.

Now it will be our job to rekindle hope. To demand a change of leadership. To demand money be spent on measurable outcomes, not "raising awareness". To demand more transparency and community involvement.

I hope that those who read this article don't come away cynical but rather become involved in demanding change from all organisations that raise funds in our name.

More on this story in the very near future.

Sign our 'CureParalysis' card and tell Governor Jerry Brown the truth about spinal cord injury

Our newest campaign to present a 'CureParalysis' card to Governor Jerry Brown has gained a lot of attention from those living with paralysis.

AB714 (Roman's Law) is asking for a million dollars a year for paralysis cure research in California and has already made it through the Assembly and is is head through the Senate where we hope it will get passed. The next step will be the Governor's desk where he will either sign or veto the bill. Last year, he vetoed it.

This year we want you to sign our giant 'CureParalysis' card to the Governor and leave your comments telling him why you want paralysis cure. Feel free to share with him not only your hopes and dreams of a cure for paralysis, but also the real horrors of paralysis.

Today I'm leaving you with a few comments that some have already made and urge you to share your heartfelt desire for a cure. Please sign below to add your name to our 'CureParalysis' card.

This campaign has now ended. Thanks for all your support.