30 May 2012

26 hours left to click for a paralysis cure

This is a massive rush to make sure that the Roman Reed act to cure paralysis (Assembly Bill AB 1657) clears the California Assembly.

YOUR emails have already had this act clear the Public Health Committee.

YOUR emails have already got this through the Appropriations Committee (where the money is decided).

And now we need YOUR EMAIL to get it through the whole of the California Assembly.

Let's make sure that we make a cure for paralysis a reality by making sure we get a majority in the Assembly, and a majority means securing the votes of FIVE more Assembly members to GUARANTEE the passage of this act in the Assembly.

You can do it, but you have to do it now!

Email the following Assembly members to guarantee a majority!

This campaign is now finished and it passed the Assembly. More information to follow. Thanks for all the great support!

26 May 2012

Rick Hansen 'answers'?!?

Picture by: Urban Mixer (Raj Taneja)
Thank you to all of you who added your names to our appeal to Rick Hansen and the Rick Hansen Foundation (RHF) about their plans to cure chronic spinal cord injury. A cure for spinal cord injury may well stay beyond our reach until RHF, as one of the largest and most well funded spinal cord injury organizations world wide, gets behind a cure with their massive funding.

As a person living with paralysis or supporting a paralyzed family member or friend, you have the right to ask these questions about cure and receive an answer. You are one of Rick Hansen's constituents.

As a member of the global community you also have a right to ask, and Rick Hansen knows it, too. Twenty five years ago he set off on a world tour because he understood that spinal cord injury and paralysis touches everyone, regardless of where they live.

And as a Canadian, you have an even more unique right to ask and demand answers as RHF's funding comes from your pocket ($117.3 million since 1988 comprising almost 45% of RHF's total funding). When you in Canada ask, Mr. Hansen should be answering with a 'Yes, sir'.

Rick Hansen on the other hand believes that you have neither the right to ask or receive an answer. 

When asked by cure activists, from their wheelchairs, at his recent Interdependence conference; that's right cure 
campaigners were on hand to make sure your questions were answered, he ducked, feigned, and swayed his way through his non-answer. He was like the Mohammad Ali of non-answers. When he couldn't non-answer anymore, he actually called your questions inappropriate for a public forum.

What's inappropriate about asking an organization which uses the slogan 'a world without paralysis after spinal cord injury' about their plans and spending on a cure for spinal cord injury?

Just so you think that I'm not making this all up, I was fortunate enough to receive a recording of the events from an anonymous conference attendee. He or she recorded the exchange between the cure activist and Mr. Hansen. Video footage may also be added soon.

Asked from the floor during a public Q&A about his plans to cure chronic spinal cord injury and the money he was pledging to it, he came out of his corner with that full Rick Hansen grin and a whistle on his lips. He thought he sounded clever, but anyone around him, especially those who know him personally, probably found it embarrassing as he totally evaded the questions. Listen to the recording.

He talked about his vision of an inclusive world. He talked about cure. He talked about the market and the availability of therapies to introduce into the market. He even had the gall to talk about us raising more money when he won't even tell us where it goes. 

But he never once answered the question. 

He actually said that how much he spends on cure all depends on how much he raises.  
Let's face it, RHF has a budget, and while he may have whispered sweet nothings about the distant future, he could have been clear about his spending on a cure for chronic spinal cord injury in the past AND in the near future. 

The person who asked the question described the answer as "disrespectful".

When the cure campaigner met Mr. Hansen on the floor of the convention, she thanked him for his "insulting answer". He snapped back that it was "a totally acceptable answer to a totally inappropriate question." He said that it was not the time or place to ask such a question in a public place and even accused the cure activist of being negative rather than going forward and being constructive.

When reminded by another activist in the room (there's more than one of us) that over 700 people asked this question, Mr. Hansen spoke even more nonsense. He wanted to know how much we have raised and that when we raise our own money, we can decide what to do with it. 

Where does Mr. Hansen thinks his money comes from? Does he think it falls off the spinal cord injury tree? 

Because the money comes from us. Because he asks for donations from anywhere in the world. Because the money is given to him in the name of 'a world without paralysis after spinal cord injury', we have the right to ask and be answered.

With this attitude of disregarding the questions of those he is meant to serve, it is no wonder that we are now hearing whiffs of discontent from those around him. 

Soon they will also say what we've already said; the emperor has no clothes.

So do we leave this alone? 

I say NO.

Let's make sure that your questions are answered in writing like you asked for. Let's make sure that your cure money is accounted for. Let's make sure that the voice of the paralyzed is heard over the roar of the Rick Hansen victory celebrations.

Let's make sure that other organizations understand that this sort of behaviour is unacceptable.

Together my friends. 

We've come this far already. Let's make sure money raised for cure is spent on the cure we want. 

12 May 2012

737 sign the Rick Hansen appeal

YOU have made our appeal campaign to the Rick Hansen Foundation the best ever.

Rick Hansen has been sent the questions that you signed your name to and now we will await an answer.

1. How much are you planning to spend in the next five years to find a cure for chronic spinal cord injury?
2. Which research projects (basic and clinical research) will be funded by Rick Hansen organizations to get people with chronic sci out of wheelchairs?
3. What is the Rick Hansen Foundation/Rick Hansen Institute's ability/willingness to fund promising science to cure chronic spinal cord injury both domestically and internationally?

Of course we all know that we've asked, but a press release has also been issued to the Canadian media and all of the main presenters at the Interdependence Conference have also been notified that we are waiting for answers.

I would love them to come back with a large list of all the things that they have done and are planning to do to cure chronic spinal cord injury. The only thing I would say then is thanks and "Why didn't you tell us when we first asked?"

In the meantime, you can also help spread the word by twittering our press release, putting it out on facebook, and even sending it to people that YOU know in the media or think would be interested.  You can find the press release at http://bit.ly/RHFPR. 


08 May 2012

CURE for the Osaka Strut. So sign it!

No one knows that I can really strut!

When we win cure, I promise that I'll take you on a tour of Osaka doing the Osaka STRUT!

What you got to do to win a front row seat to the Osaka STRUT is to SIGN!

ONE MORE DAY to sign for CURE for our appeal to:

Rick Hansen to stand on CURE's side. www.bit.ly/RickHansen

To the California Assembly to fund the Roman Reed cure paralysis act. http://www.stemcellsandatombombs.blogspot.jp/2012/04/hit-send-button-below-to-help-cure-for.html

Don't forget the Osaka STRUT!

05 May 2012

Four more days to sign the Rick Hansen appeal

Thanks to all the great work you all have done, almost 700 people world wide have added their names to our appeal to Rick Hansen. As the leader of one of the biggest organizations dealing with spinal cord injury in the world, we all want to know his plans to CURE chronic spinal cord injury.

Just getting 700 people to add their names to something like this is a victory in itself, but we don't want to stop here. If you have a few seconds, I'd like to give you three options to spread the word further. On Wednesday, Japan time, which is Tuesday for most of you, I will wrap this up and send it to Mr. Hansen and to the Canadian press.

Let's keep up the good work and see how many more we can get in the last three days.

Email is the best way to get your message across to your friends.
Launch your email and copy and past this short message.

I know you're busy and so am I so I just want to write a really short message. Paralyzed people and their supporters throughout the world have some very important questions to ask about a cure for chronic spinal cord injury. In one minute you'll be able to read the information and add your name at www.bit.ly/RickHansenI already have and I hope you do, too. www.bit.ly/RickHansen.

launch www.twitter.com 
Another great way for you to get your message across is on Twitter. Many people value this as a reliable place to get news and your followers would love to get your news about signing our appeal.
Just click the icon to launch twitter and copy and paste this short message.

700 have added their name to Rick Hansen to stand up for a cure for chronic spinal cord injuries. Add your name. http://www.bit.ly/RickHansen

launch www.facebook.com
Finally, everybody's favourite, FaceBook. Go to your status update and urge all of your friends to add their names to our appeal. Click the icon to launch FaceBook and copy and paste this message to your status updates.

Almost 700 paralyzed folks and their supporters have signed our appeal to Rick Hansen to stand firmly behind a cure for chronic spinal cord injury. How about you. www.bit.ly/RickHansen

04 May 2012

Appeal to Rick Hansen - 5 days left - please sign

The Rick Hansen Foundation (RHF) and Rick Hansen Institute (RHI) is one of the largest and well financed organization dealing with spinal cord injury (SCI) in the WHOLE WORLD.


There is a concern in the paralysis community about the RHF and RHI’s spending on a cure for paralysis.

In 2011 these concerns led to over 300 emails being sent to RHF’s CEO, Mr. Art Reitmayer, asking for clarification.


“Please outline your spending on translational research for central nervous system regeneration, i.e., a cure for spinal cord injury.”

We were shocked to find the answer void of any content. He answered,

81% of funds raised by RHF have been directed towards the search for a cure for SCI and quality of life initiatives.”

You can imagine the red flags that were raised by an answer like this.

So this time we want to forget about the past and ask Rick directly about RHF/I’s plans to get people out of wheelchairs and walking and we want an announcement made at the May Interdependence 2012 conference in Vancouver.

Help Rick strengthen CURE’s side by adding your name, along with over 600 people worldwide, to the following questions.

To: Mr. Rick Hansen
Re: Getting us up and walking

We want to be with you in your fight to cure paralysis so naturally we want to know if you’re really with us.

Please answer the following clearly in writing and publicly at the Interdependence 2012 conference.

A.    How much are you planning to spend in the next 5 years to find a cure for chronic SCI?
B.    Which research projects (basic and clinical research) will be funded by Rick Hansen organizations to get people with chronic SCI out of wheelchairs?
C.    What is RHF/I’s ability and/or willingness to fund promising science to cure chronic spinal cord injury both domestically and internationally.

This campaign has now ended. Thank you for your support.

01 May 2012

The May Day spirit to cure paralysis

Add your name to our appeal
I know many of you in the paralysis world don't think about May Day like I do. In fact, some of you probably think that mixing May Day and cure is not such a good idea.

But from where I sit, I don't see a really big difference.

May Day was started by those who refused to accept the status quo. Just like us in the cure movement who don't buy into the position that we'll never walk again.

May Day is about people working together to improve their lot in life. How different is this from all our campaigns? We know that one voice will not get us out of our chairs. We believe in many voices singing in unison.

May Day is international. And on the left you can see all the people from different countries who have supported our campaign to the Rick Hansen Foundation and to the California State Assembly.

So now I leave you with the words of Frederick Douglass who was born a slave, escaped to freedom, and campaigned again slavery his whole life.

The next time someone tells you that sitting and waiting for a cure for paralysis is the answer, and that we should not raise our voice too loudly or boldly, please tell them what Frederick Douglass said.

"If there is no struggle, there is no progress. Those who profess to favor freedom, and yet depreciate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightning. They want the ocean without the awful roar of its many waters. This struggle may be a moral one; or it may be a physical one; or it may be both moral and physical; but it must be a struggle.

So please remember to add your name to our campaigns!