I love U2FP. I hope that you'll 'like' them on facebook

Unite2FightParalysis. This was the group that inspired me to get involved in the fight to cure paralysis. Can you imagine how they motivated me?

www.facebook.com/Unite2FightParalysis

Just look at their name.

I was paralyzed and laying in a hospital bed and their name came shouting out at me.

UNITE 2 FIGHT PARALYSIS

While the rest of the world was getting me ready for my life sentence in the chair, there was a group that believed that you could FIGHT paralysis by UNITING.

Well, this appealed to me on three fronts.

PARALYSIS: Well, I was paralyzed.

FIGHT: I believe that this is what we must do to solve most problems.

UNITE: Fit in perfectly with my trade union background.

So, I appeal to you to 'like' them on facebook. They want five hundred likes by the end of this month.

www.facebook.com/Unite2FightParalysis

While you're at it: don't forget to like my blog's facebook page, too.

More about U2FP

About

Unite 2 Fight Paralysis is YOUR grassroots community advocacy organization that will help accelerate discovery and application of curative therapies for paralysis.

Mission

Our mission is to unite and empower the paralysis community, building a powerful voice that will help bring full recovery to all those living with paralysis.

Overview

We are the grassroots voice of advocacy in the paralysis community. Each year we host Working 2 Walk, a Science & Advocacy Symposium that brings together key players in the effort to bring curative therapies to reality. Research scientists, practitioners, and community members meet to exchange information and develop strategies for accelerating the cure.

Why in the hell would I go skydiving? (Unless it was to cure paralysis)

In November 2012 I wrote a blog post called "Skydiving? Why in the hell would I go skydiving?" My point was that I wasn't interested in crazy wheel chair activities, I just wanted my life back. 

Well, Lolly Mack, is going skydiving not for fun, but to raise money for the war on paralysis! Good luck Lolly. If I weren't a chicken, I'd join you, too.

Cure IS on the horizon... Please sponsor Lolly Mack's SKYDIVE.. only 2 weeks to go and she'll be raising money for Spinal Research and Back Up.She hasn't reached her target yet so would be grateful for ANY donations. Let's rise up and cure paralysis. Thanks =] 
www.justgiving.com/Lolly-Mack 

Lolly's Story

Hello Everyone,

Well you all know my story. If you don't, I was involved in an incident in a nightclub which left me paralysed.I underwent 8 hours of surgery and then spent 10 months in hospital and was told I would never walk again. Devastating not only to me but to my family and friends. 

On March 3rd 2013 I will be leaping out of a plane to raise as much money as I possibly can for Spinal Research, helping people like me get back on their feet again.

Spinal Research is the UK's leading charity funding medical research around the world to develop reliable treatments for paralysis caused by broken back or neck. Thanks to such pioneering research paralysis can now be treated and we stand on the brink of applying therapies that will restore movement and feeling and transform the lives of paralysed people. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now. Now matter how small the donation every little helps. I would just like to say a big, big thank you from me and god bless you x mwah x

Canadians to cure chronic spinal cord injury

Thank you for supporting our past campaigns aimed at the Rick Hansen Foundation (RHF) and Rick Hansen Institute (RHI). The aim of these campaigns was to encourage RHF/RHI to spend more time and money on a cure for chronic spinal cord injury.

The campaigns that you participated in had a huge impact. RHF/RHI agreed to dialogue and we started preparing for face to face talks with them. Unfortunately, senior leaders from both organisations refused to attend the proposed talks and their communications representatives repeatedly postponed the talks, eventually withdrawing altogether.

Instead of getting dialogue, which we campaigned so hard for, we received a 13 page document.

The document contained no plan to cure chronic spinal cord injury. Click for a copy of the full document and our three page summary.

We have been brushed off and so have decided to take the campaign to the next level.

We are now appealing to Canadians to participate in our campaign to the Federal Government. RHF/RHI receive a majority of their funding from the Federal Government and if they won’t respond to us, it’s time to deal directly with their funders.

We are demanding that federal money be set aside particularly for chronic cure.

Supporters from all over the world can and will sign a petition, but it's really important for Canadians to be the ground troops for cure. This is Canadian tax-payer money at stake!

ALL Canadians are welcome, injured or not. As a Canadian you will:

• be the sponsor of the petition. You will  make an appeal to the world to ensure that one of the largest and most well financed SCI organization makes chronic cure a priority
• visit your MP to explain the petition before it is released to the world and deliver it after it has been signed by our global supporters
• visit your local paper to talk about our work and try to get as much attention as possible through other media

You will be provided with full background information and a list of talking points for the press and MPs. You will have access to a network of global cure-activists who will be on hand to support and guide you through this exciting process.

So come on Canadians!

Stand up for a cure for chronic spinal cord injury so that one day, everyone can stand.

Please leave your name and contact details by clicking here for more information or to join the Canadians Cure Chronic SCI.

Drowning man survey results by Rick Hansen Foundation

Looking back at yesterday's post "Peace talks break down with RHF", I posted a document which was sent to us by the Rick Hansen Institute outlining their plans to cure paralysis. Not much of an outline or plan to cure chronic spinal cord injury, but they say it's based on a survey of people living with SCI. 

In fact they have done so many surveys, you'd figure that you could cure SCI with surveys.

• They did a survey of 300 Canadians living with SCI in 2009.
• The survey was so well done that it, "confirmed the findings of several scientific surveys conducted in the past decade here in Canada and around the world."
• More recently they did another survey of 1600 Canadians living with SCI.
• They even go so far as to say this about their findings, "This has been proven through multiple surveys and research."

To me it seems that the point of these surveys is to "prove" that people living with SCI don't want a cure. 

What did their 2009 survey of 300 Canadians with SCI find regarding priority needs?

• Bladder function/urinary tract infection was the clear priority for people with SCI.
• The second most identified top priority was neuropathic pain.
• Pressure ulcers and bowel complications rounded out the four most commonly identified top priorities.

So I guess, people with SCI aren't interested in cure. Really?

I also have a list of what I want restored from first to last, but this doesn't mean I don't understand that regeneration will solve the problems I want. But I guess a survey can prove anything.

So today I want to prove to you that the last thing a drowning man wants is a glass of water, and his first priority is to get his head above water. When questioned on whether they would prefer to get their head out of the water or get a million dollars, they overwhelmingly chose the former (overwhelmingly is a bit of an understatement - it was 100%).

Method

1. Hold a man's head down in water by putting your foot down firmly on the back of his neck.
2. While his head is in the puddle and he can't escape give him three choices and have him answer by indicating with his fingers which choice he wants to make. 
3. The three questions are:  I. take your foot off his neck so he won't drown. II. get one million dollars. III. get a drink of water.

Findings

All 300 men chose number one.

We can therefore conclude that people are not interested in money or drinking water.

Does this sound outrageous. Do you think that comparing my survey to RHI's survey is like comparing apples to oranges? I don't think so.

Basically, when confronted with issues like urinary infections and pressure sores which will kill us before cure can be achieved, people will want to clear up the things that will kill them in the short term. This is not absurd and my survey and RHI's survey prove the exact same thing.

Doing surveys like this is a complete waste of time because we already know the answers. RHI should be leaders and you don't lead by doing surveys for which the answers are already clear.

The other day I was rereading a favourite book of mine called "Made in Japan - Akio Morita and Sony". In the book the late Mr. Morita recounts how they put out the Walkman with no market research. Why?

According to Mr. Morita, "Our plan is to lead the public with new products rather than ask them what kind of products they want...The public does not know what is possible, but we do.''

Mr. Hansen needs to take a page out of this book and become a leader, not a follower. Being leaders doesn't mean not listening to what the community wants, but it is to offer clear choices based on what is possible in the near future, something that none of these surveys do. Taking care of our real, short term problems and offering us a vision of cure in the future is the real balance between care and cure as the two are not a dichotomy.

Peace talks break down with Rick Hansen Foundation/Institue

In October 2012 we received news from the Rick Hansen Institute (RHI) would meet to discuss their plans and vision to cure chronic spinal cord injury. Sadly, after meeting one on one with a representative of RHF and Rick Hansen Institute (RHI) twice and sending various emails back and forth confirming the agenda and participants  we were asked once again to wait for a full meeting.

We had been expecting a meeting with Mr. Bill Barrable, CEO of RHI, and even after this was taken off the table, we still agreed to go ahead to show our good faith at working together in order to cure chronic spinal cord injury. The meeting was pushed back from December to the end of January, and then finally on 24 January we received news that they wanted us to wait even longer.

So after conferring with other campaigners, it was decided that we would send the following letter to end our participation in future talks unless either Mr. Barrable or Mr. Rick Hansen are present in order to add a degree of seriousness to our discussions.

We had hoped that RHF/I were ready to talk. The CEO of the Christopher and Dana Reeve Foundation met with us after one request. Why won't RHF/I answer our questions and engage cure campaigners in dialogue? 

RHF/I's deathly silence now leaves us believing that their message about "a life without paralysis after spinal cord injury" does NOT include those of currently living with the horrors of spinal cord injury. A complete history of our campaign will soon be ready.

We did receive a thirteen page report from RHI outlining their plans for cure. This was instead of talking like had been promised. We had an agenda for the meeting and this thirteen page document was supposed to be in response to the agenda points.

The meeting agenda points were:

1. What is RHF/I's definition of a cure for chronic spinal cord injury, what is currently being done, and how it relates specifically to a cure for chronic spinal cord injury.
2. What is RHF/I's vision for curing chronic spinal cord injury and how is that vision being put to work concretely, i.e., what are the plans to work with other foundations and scientists nationally and internationally? What are the plans to engage those currently living with SCI?
3. In regards to the five year plan, what projects will be aimed at curing chronic spinal cord injury and in terms of total funds, as much as is it is possible, the overall funding split in terms of cure/care/quality of life and in terms of cure for acute/chronic.

Well we got some answers to the questions, but mostly it is a thirteen page document, with everything including the kitchen sink jammed in, which tries to prove that 2+2 is 5.

I would like to point out a few sad quotes from the document which shows RHF/I's complete lack of both vision and leadership in the fight for a cure. The complete lack of any urgency is what makes the document painful.

"Because RHI has never focused exclusively on chronic SCI as opposed to injuries in any other part of the lifespan of people with SCI, we haven't in the past categorized our investment in projects by their degree of applicability or relevance to that specific population, and most of our projects are relevant to people in many stages of life post-injury."

I'm sorry, but this statement shows that they have no plan or understanding regarding a cure for chronic spinal cord injury.

"The development and execution of RHI International Cure Strategy.....is meant to provide a road map towards the restoration of function after SCI (as defined previously in this document) and will outline the activities, knowledge, infrastructure, tools, partnerships and funds required for RHI to execute and advance its cure strategy over the next 25 years."

I have to admit that having a 25 year plan is not a bad idea, but shorter term goals must be the focus. Saying you have a 25 year plan is a great way to keep putting off real real results.

Our public campaign to secure money to cure chronic spinal cord injury will resume shortly and we hope that you can all support our campaign.

You can download the full 13 page document or a three page summary prepared by CureCaptain Ruth Purves.

Patient Advocates & California Institute of Medicine

You can read Don Reed's full report at www.stemcellbattles.com.

Firstly, I like to thank everyone who sent an email to make sure that the voices of patient advocates were not removed from the California Institute of Regenerative Medicine's (CIRM) board of directors.

A recent study raised concern that, "The committee believes that personal conflicts of interest arising from one's own or a family member's affliction with a particular disease...can create bias for board members.." 

While we may laugh at such a crazy statement, there was serious concern that this would be the end of patient advocates' right to vote on important projects.

After reading this statement, one person told me that it would be similar to workers giving control of their unions to bosses so that there was no conflict of interest.

Another person wrote to me that patients organizing for cure was not a conflict of interest, but rather a convergence of interest.  

Here is what Don Reed has to say about patient advocates. "Patient advocates are the people who organized, led, fought for, and supported Proposition 71, the citizens’ initiative which led to the California Institute of Regenerative Medicine. Bob Klein who inspired the program has a son with type one diabetes. My son Roman Reed is paralyzed from the shoulders down. Patient advocates stood on street corners for nearly a year gathering signatures to get the measure on the ballot. Without us, there would be no three billion dollar stem cell program."

"Yet now, having done the work, we were not to be part of the decision-making?"

Well, some changes were made, almost unanimously to make sure that any whiff of conflict of interest was removed.

In regards to patient advocates' voices. We lost the right to vote on the Grants Working Group, which recommends research projects to the board, but patients on the board still have the right to vote and participate in public comment.

I would say this was a victory for all of who sent in their emails.

Please read Don Reed's full report at www.stemcellbattles.com.

Send an email to support our Italian friends in their fight for cure

Chronic Spinal Cord Injury/is a form of torture. Fight with us for a cure!

When we campaign in America for more focus on CURE from the Christopher and Dana Reeve Foundation, our Italian friends are always with us.

When we campaign in California for more spending to CURE chronic spinal cord injury, our Italian friends respond in droves.

When we appeal to the Rick Hansen Foundation for more transparency in their spending on CURE for chronic spinal cord injury, it’s our Italian comrades who help make our numbers remarkable.

NOW, the Italians need to us to support their efforts to make CURE a priority. You can repay their support by sending a simple email.

On 9 January, the president of the Italian Paralymic Committee, Mr. Luca Pancalli stated on RAI’s (Italian Broadcasting Corporation’s) TG1 that…

“If I could live life again I would include my accident (which left him a quadriplegic . Happiness is wanting exactly what you already have.”

In response to this insulting statement made by a public personality, Ms. Loredana Longo, spokesperson for the Sruotiamoci CURE paralysis movement wrote a letter to Mr. Pancalli condemning his statement as counterproductive to cure research as it falsifies the daily suffering of those living with spinal cord injury.

In my opinion as StemCells&AtomBombs, this is not simply about the crude statements made by a public figure, but about the media's constant refusal to portray the reality of paralysis and of our voices for cure.

Under the banner “Chronic spinal cord injury is a form of torture”, Italian cure activists are demanding that RAI give them the right of reply to show the reality of spinal cord injury. In Ms. Longo’s own words, “To show that aside from living life from a wheelchair, we are forced to urinate from a catheter, use invasive methods to empty our bowels, and are subject to the effects of liver damaging drugs.”

In just two short days Italians have sent over 150 emails to RAI to back up their demands for a right of reply.

You can help them by doing the same. Please send your email by completing the below fields.

This campaign has now ended. Thanks for all the support. It was tremendous and it caused RAI to agree to an interview to the main organizer in Italy. More to follow.