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.

Send an email to stop threats against the California Institute of Regenerative Medicine

-Go immediately to the bottom of this blog to send your email or send after you finish reading -

What is the California Institute of Regenerative Medicine(CIRM)?

In a nutshell, CIRM funds research to cure diseases with regenerative medicine.

The work of CIRM is very important to us – regenerating the spinal cord means we can walk again.

CIRM is currently funding three studies for spinal cord injury totalling $6.3 million.

Who runs it?

Currently, the final vote for funding goes to the board of directors called the Independent Citizens Oversight Committee (ISOC) which is a 29 member panel of experts. In this group of experts patient advocates are also included. Patient advocates are people like me and you who are suffering from spinal cord injury (and other diseases) and our families who fight to cure us.

What’s the threat?

A very negative study:  “Committee on a Review of the California Institute for Regenerative Medicine: Health Sciences Policy; Institute of Medicine”. While it has no power on its own, the study could be used as a basis for new laws attacking the program.

The study objectsto the Independents Citizens Oversight Committee on two counts:

1.     The concern is that because some board members work for colleges, they may use their votes to benefit their parent organizations.  It says: “They make proposals to themselves…regarding what should be funded. They cannot exert independent oversight.”

That is not true.

Members of the governing board NEVER “make proposals to themselves”. They are prevented by law from so doing. They may not even give input on projects which would benefit their parent organizations.

2.     And most importantly, it objects to patient advocates on the board. “…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…”—Section 3-page 14)

In other words, patient advocates are automatically biased, because we are fighting to cure our loved ones or ourselves.

This attitude disrespects patient advocates and patients everywhere. It implies that we are so caught up in our own suffering that we cannot be trusted to make a rational decision. This is not only insulting, but could make board participation virtually impossible.

Consider:  an estimated 100 million Americans (one in three!) suffer a chronic disease or disability. All of these people have families.  That’s pretty much everybody— should weall be disqualified?

What does Committee on a Review of the California Institute for Regenerative Medicine recommend?

 “The board…should not be involved in day-to-day management. (It) should delegate day-to-day management responsibilities to the President…” –section 3, page 11

Sounds harmless at first—but what they mean by “day-to-day management” is deciding who gets the money.  Giving grants for stem cell research is what the program is all about. Deny that authority to the board of directors, and they might as well go home.  

Who would make those decisions now, instead of our 29-member board, and the public?

Two people.

“The Senior Vice President and the President…decide on a final slate of proposals (of research projects) to submit to the ICOC for a “yes” or “no” vote on the entire slate.

…the ICOC… should NOT (emphasis added) be empowered to evaluate individual applications…..”)— Section 4, page 18

Trying to evaluate the California stem cell program without patients and patient advocates is like studying women’s issues – but only allowing the men to speak.

What can you do about it?

We all know that the voices of patient advocates are essential to running a proper system to cure disease including spinal cord injury.

You can send an email objecting to this study’s recommendations on removing the power of patient advocates from the board of directors.

Let’s make sure our voices are not silenced!

This campaign has now ended. Thanks everyone for their support.

Wishing all of you hope for 2013

The end of another year.

I've now seen part of 2009, and all of 2010, 2011, and all of 2012 as a paraplegic. My paralysis has caused me to have three operations and spend almost one and a half years in hospital.

Everything that has happened to me I later read to be quite rare conditions starting with my initial 'injury', a subdural hematoma in my spinal cord, very, very rare, probably caused by an arteriovenous malformation also rare. I then had an operation for an arachnoid cyst which formed at the initial lesion site, quite rare, and then followed up by syringomyelia which is like a fluid filled tube in the spinal cord which goes upwards, thus causing damage above my injury level. For me this meant a loss of sensation in my back and some pain in my upper right arm.  Syringomyelia, also rare. I've had so many rare things that I sometimes joke to myself that I ought to start buying lottery tickets.

You'd think that by this point in the game I'd start to lose hope in ever walking (and going to the toilet normally and making love - let's not forget these biggies) like before, but I haven't. 

And I tell you that my hope is not based on a simple want or an illusion, but on real scientific facts that someday we will return from paralysis.

It's impossible to name ALL of the big research going on and because I know that many of you have an aversion to reading long scientific papers, I would like to introduce you to hope that you can watch.

In my September and October blogs I introduced you to the Working2Walk conference held in California. This conference introduced some amazing new research into curing paralysis and not only was this information made available to the participants, but it’s also available to all of us on the Unite 2 Fight Paralysis vimeo site.

I urge you all to spend some time watching these videos and learning about the real hope that exists for us. 

And as always, I urge you not to just sit and wait for cure to bite us in our collective rear ends, but to work towards it. If you don't know what to do, a good place to start is with my blog’s CureCaptains or the Cure Warriors run by U2FP. These programmes help you participate in a cure for paralysis.

We also have some work ready to go for January 2013. First we will be meeting with a leadership team from the Rick Hansen Institute/Foundation (RHF/I) to talk about their vision for a cure for paralysis. Many of you supported our actions aimed at RHF/I in the past and it was your emails of support that finally got them to agree to meet with cure activists from across the world to hear our ideas on how they can further a cure for chronic spinal cord injury.

Also, on 15 January, a colleague of mine from the UK and I will talk with the CEO of Christopher and Dana Reeve Foundation to talk about our concerns that they are spending too much time 'celebrating' paralysis, and not putting out enough information out on 'curing' paralysis. 

Both of these meetings have been set up because you all continue to stir hope and support our actions.

I leave you with one final message for next year from a man who is my hero; Tommy Douglas who led the first socialist government in all of North America when he was the premier of Saskatchewan, and is the father of socialized medicine in Canada.

"We should never, never be afraid or ashamed about dreams...Where people have no dreams and no hopes and aspirations, life becomes dull and a meaningless wilderness."

Working2Walk - the book

Many of you know our friend Kate Willette, who's been writing the Working2Walk live blog for the last five years. She's come up with a way to produce a book about the conference that we'd all like to see in as many hands as possible. The way it works is:

• She describes the project plan in detail, and the clock starts ticking.
• She reaches out to everyone who would be interested in the finished product.
• She asks for people to back that project by pre-ordering a book or two, sharing the idea with their own communities, and kicking in a small amount to pay for the cost of production and shipping.

So far, she's got commitments for more than half the project! There's a time limit, though, and if she doesn't get fully funded by January 6th, there won't be a book! If you can help, go to Kickstarter now and do it! Then add a note and forward this e-mail to everyone you can think of. We really want this to happen; we really want our story to be out there in print, in hospitals and libraries and exercise facilities and homes.

Many thanks from everyone at Unite 2 Fight Paralysis

________________

This post was reprinted from a 19 December emailing from Unite 2 Fight Paralysis

You speak to the Rick Hansen Foundation & Institute

First of all, I'd like to thank all our readers out there who stuck with us through all our campaigns to the Rick Hansen Group (RHG: Rick Hansen Foundation and Rick Hansen Institute). All the way from our first campaign in June of 2011, followed by our appeal for direct talks in August 2011 and ending with the last campaign targetting the Interdependence conference in May of this year. We finally will get what we've always asked for, a chance for direct talks with those leading RHG.

After some preliminary discussions and email between me and RHG, it looks like three delegates from our campaigns from Canada, the UK, and Japan will meet leaders of RHG by skype. Our goal, just one thing, to find out about RHG's vision and plans to become leaders for a cure for chronic spinal cord injury (SCI) and how we the paralyzed and our supporters can be involved.

From the very beginning we understood that the voices of ones and twos are easily shunted aside and the more we spoke in unison, the louder our voices grew; from the ninety or so who sent the first protest emails to the last group of 750 who emailed RHG during our INterDEPENDENCE campaign. The paralyzed are standing up and demanding that large foundations show leadership the size of their purses in building collaboration and vision in our war on paralysis.

Thank you. These upcoming talks are your good work and you will be kept abreast of the talks.

Dennis Tesolat
www.StemCellsandAtomBombs.blogspot.com
BlackBerry from DOCOMO

Your solidarity WILL bring a paralysis cure!

Thank you to all of you who sent an email to the Christopher and Dana Reeve Foundation (CDRF) to protest their insulting blog post 'Benefits OF Disability'. In just a few days almost 170 people sent protest emails to CDRF to tell them to concentrate on CURE.

We'll keep you informed of any developments after we sent the following email this morning telling CDRF that we were ending our campaign and that they should listen to paralyzed folks and their supporters all over the world and work on a cure, not a celebration, of paralysis.
__________________________________________________

Dear Mr.Wilderotter,

My name is Dennis Tesolat, one of organisers of the recent email campaign regarding the "Benefits of Disability" blog which you hosted on your website. There was widespread outrage regarding this article, but instead trying to get your attention as individuals we decided that the message would be much clearer as a group. Often when we speak as individuals, our voices are shunted aside. This way you know that with a relatively small, low profile appeal, there are quite a few folks who don't like the article, and more than that, people would like the public face of CDRF to talk a little more about cure.

The publication of the blog on your website has caused outrage primarily because of the insulting context of the article, but also because it highlights a far more serious issue within CDRF; poor communication regarding cure related activities. CDRF is vocal in its support of care and quality of life initiatives but the message that comes out of CDRF regarding cure is often not as clear, or as loud. Surely equal space should be given to both care and cure initiatives ensure today’s care and tomorrow’s cure.

I hope that you understand the real value of your organization and the high impact of your foundation's name. CDRF has a real opportunity to be a leader in this field. However, statements in celebration of paralysis, the mainstay of current CDRF public announcements, discourage community support as these messages negate your very real focus on curing spinal cord injury. CDRF’s communication strategy regarding cure initiatives lacks structure and coherence, leading many to believe that cure is in fact not a CDRF priority. We question the impact that this poor communication strategy regarding cure has on the ethos of the whole organisation; is it really about finding tomorrow’s cure, or is it just about celebrating disability? The public messages you put out are not just advertising, but will also impact your organization's own internal focus.

I hope this letter can be accepted as an invitation to dialogue. We would be happy to talk with you about some of the issue that CDRF is currently facing regarding cure activities and related communication strategies. The email campaign regarding the article will be brought to a close. We hope it has enabled internal insight and analysis into the message that CDRF puts into the community. We hope our voices have been heard and we look forward to seeing improvements in the great work that CDRF does.

Sincerely,

Dennis Tesolat

www.StemCellsandAtomBombs.org

One click to stop the NONSENSE and stand up for paralysis CURE

I want you to take one second to stand up for paralysis cure and send a message to the CEO of the Christopher and Dana Reeve Foundation (CDRF) and tell him that you share my outrage. Please read on.

______________________

Despite what a majority of us feel is a living hell, there are apparently many benefits to paralyzed life; that is according to Michael Collins who wrote the article "The benefits of disability" on the CDRF website.

Like me, you'll probably be infuriated.

Adding insult to injury, not only was this the opinion of one writer, CDRF found it worth putting up on Facebook. If we don’t say something, everyone will think that we too feel there are many benefits to disability.

The author's attitude, which CDRF seem to support, is exactly the kind of thinking that holds back a cure for paralysis and other disabilities. As long as people keep talking about our good fortune and all the supposed ‘benefits’, a cure will never be urgent, but it is. This guy makes it sound like being paralyzed is OK because of all the great benefits available.

Well, I don’t want this guy speaking for me, and neither should you.

Some people have ‘liked’ his post on Facebook as he refers to Thanksgiving and Christmas as a time to reflect on the blessings of disability. Others have asked what is there to ‘like’. The suffering, perhaps? His sentimentality about this time of year really detracts from the far more serious issues of living with a disability year-round.

Instead of using the holiday season to be thankful for our disabilities, lets use it to appeal to the feeling of human solidarity that will someday lead to a cure for our devastating injuries.

You can help make CURE a priority in two really quick steps by letting CDRF know that they should get back to concentrating on curing paralysis instead of sending us insulting holiday messages.

• Send a message to CDRF by clicking below and tell them that you're insulted by the "Benefits of disability" and demand that they take it off Facebook and their website.
• Go to the Facebook page and leave your own comment to the author

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