29 June 2013

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.

24 June 2013

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.

23 June 2013

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.

16 June 2013

Support paralysis cure for father's day. Sign the card!

My kids asked me what I wanted for Father's Day...

So what I did, was have them sit at the computer and sign our 'CureParalysis' card to Governor Jerry Brown in California. 

This card will be presented to the Governor to make sure that he signs AB714 into law once we manage to get it through the last stages in the California Senate. AB714 (Wieckowski D), also known as Roman's Law, will directly fund the Roman Reed Spinal Cord Injury Research Grant Fund and Core Laboratory. In addition, it will also provide a research funding account and lab to the University of California to fund and carry out pioneering science to advance the field of spinal cord injury research. AB714 will also provide funding to ALL of the best spinal cord injury research scientists at Universities, Industry and Colleges in California.

Here is another son who signed our card to the Governor to support his father.

Stephen Case from Tarzana, California wrote:
Please sir. My name is Stephen case. 10 years ago my dad had an accident on a 4 wheeler. He is now a quadriplegic and his life is a constant struggle. I'd beg you on my knees to sign this bill , not just for my dad but for all paralyzed around the world. My dad is my hero. Please give hope to all those suffering from spinal cord injury around the world.

Eric Stegall, another paralysed father from San Martin, California wrote:
Please sign AB 714. I am I was paralyzed in a motorcycle accident and it is a struggle to get through each day. I am suffering, my wife and kids are suffering. Please sign AB714 and let me have some hope of there being a CURE for paralysis someday. Living with paralysis is not really "living life" at all.
Thank you.

And it's not just sons supporting fathers on Father's Day, but also the other way around.

Don Reed Sponsored California's Roman Reed Spinal Cord Injury Research Act of 1999. Named after his quadriplegic son who was paralysed in his first game of college football "Roman's Law" has provided $14 million in state funding. The funding to Roman's Law was lost a few years ago but this year we're on track to get it back, but we need your support.

Here's what Don Reed has to say:
Passing Assembly Bill 714, to fund the Roman Reed Spinal Cord injury Research Act is a help to young scientists who might otherwise have to leave the field. With an average age of 44 for scientists getting their first NIH grant, what happens to the young men and women whose creativity advances all our hopes? The RR Act gives small grants of $20-$50,000-- success with a small grant gives a scientist a track record, so he or she now has evidence of competence-- and can try for the bigger grants with a far greater chance of success.

And one day, all across our world, paralysis will never again be called "incurable".

Help make this a special Father's Day for me, Don, Eric, and Stephen by signing our 'CureParalysis' card by adding your name, details, and even a special cure message if you want so one day 'paralysis will never again be called incurable'.

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

04 June 2013

To Governor Jerry Brown of California. PLEASE!

Many of you have been following our campaign to pass Roman's Law (AB714) in California for $2 million annually in spending on a cure for spinal cord injury and other forms of paralysis and we all thank you for your continued emails and faxes.

The road from bill to law in America, and in most of countries, has many stages, and we need your support NOW to help at the important final stage when the Governor decides whether to sign or veto this bill. 

Currently, Roman's Law has passed two California Assembly committees and full Assembly with no votes against, but there is no room for complacency. After this we're looking at two more Senate committees and then the full Senate. 

Last year, with your support we passed all these hurdles only to have the Governor Jerry Brown veto the bill. 

So this time, I want to start preparing for the Governor's desk as soon as possible.

By the time this bill passes all those committees I want to present Governor Jerry Brown with a giant card with your comments asking him to sign the bill and bring hope to paralysis survivors in California and all over the world.

What can you do? 

You can add your name and other details to our 'Sign AB714 into law to advance the war on paralysis' or add your own comments.

And don't forget to encourage your friends to do the same. Remember, we don't want to present a card with a lot of white space.

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