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.

Finally some answers from the Rick Hansen Institute

Compared to getting answers from the Rick Hansen Foundation, the Rick Hansen INSTITUTE gave us some answers after only a few emails and some back and forth on facebook (still too slow in my opinion). 

I'm happy that they gave us answers and that the answers were quite detailed, but I have to admit that in my opinion, the answers clearly show that they are doing nothing, or very very little, to deal with a cure for chronic spinal cord injury.

RHI's advertising makes it look like they are dealing with a cure for chronics. Have a look at http://www.rickhanseninstitute.org/images/header/trudeau_oneday1.jpg and see as one of their own board members, Marie Trudeau who was injured at eighteen, says that, "One day...I hope to run on the beach." This is a clear statement that they are committed to a cure for chronics; I just wish that their research showed the same commitment.

Another good point is that they have agreed to talk. We are in the midst of trying to organize the first talk between myself and Mr. Bill Barrable, RHI's CEO. I'll keep you all posted about the progress.

Now without further ado, I will let you judge for yourself about the amount of RHI's work on a cure for chronic spinal cord injury.

__________________________________

Legend

Blue: Our questions to RIH

Black: RIH answers

Green highlighting: our highlighting of the main part of the answers

Red: Our thoughts and/or questions

You can also download this document at http://www.scribd.com/doc/112757536.

___________________________________

Q: What percentage of your budget went to research (basic or translational) for a cure for chronic spinal cord injury in 2009, 2010, and 2011?

A: RHI hasn’t and doesn’t invest in basic or discovery research.

I guess that translation and not basic research is their mission, but whether this is correct or not is a different story. Regardless of this we need to find out what basic and pre clinical research they are looking at for chronics. Since they are involved in translation, they should be on the lookout for prospective research aimed at chronics.

The cost of basic science research continues to increase, with the funding required to do pre-clinical research on a potential SCI therapy in the multi-millions. In conversation with our NIH partners, RHI was advised to focus on the areas of research that are essential to translating research from the basic science discovery to the patient's own bedside,

Including their answer about ICORD below, we now know who is responsible for basic research and who is responsible for translational research.

where funding is generally harder to come by.  Large public research funders like the Canadian Institutes of Health Research, the Natural Sciences & Engineering Research Council, and the National Institutes of Health (USA) fund this type of research,

Again, if they can name the institutions responsible for basic research, what research is RHI currently following for chronic spinal cord injury?

whereas there are few logical funders for health services research, best practices implementation (to improve and standardize SCI care), clinical trials networks, and other forms of capacity building for SCI clinical research. 

Thus, RHI has been directed to invest our federal funding in these areas that are essential pieces of translational research (patient registry and research platform, clinical research network and standardizing SCI care and outcomes across the country) that are unlikely to receive support from other funding. I

These are three things they do.

Patient registry and research platforms: how does it apply to chronics?

Clinical research network: Yes, can be used for chronics but is a whole network really necessary.

Standardizing SCI care and outcomes: Outcomes must be their registry. Important for acute cure but I don’t see the benefit for chronics.

In a sense it’s like putting the care ahead of the horse.

in this way, RHI is ensuring we are good stewards of our public funding, avoiding duplicating what is being done by our discovery science partners at ICORD. Following this strategy, RHI/RHF also contributes to seed funding for our SCI research partners at ICORD, in order to enable SCI academic researchers to do the preliminary research necessary to obtain research grants. 

Any seed funding toward a cure for chronic SCI? Again, not naming it in this document makes one doubt that there is any seed funding for chronic SCI. If they can do seed funding for ICORD it does mean that they are involved in basic research by financially supporting the work at other organizations.

Now, onto where we spend our time. About 20% of our projects deal with reducing paralysis, and another 40% or so aim to enhance physical function. Unfortunately, it is next to impossible to calculate accurately how much of our budget was spent on a cure for chronic SCI, as many of our projects target more than one expected outcome. For example, our Rick Hansen Spinal Cord Injury Registry (RHSCIR) collects data on people in Canada with an SCI,

Reducing paralysis: is not cure and often reducing paralysis is dealing with outcomes immediately after injury.

Enhancing physical function: by doing what? How do you enhance physical function of a complete chronic injury without regeneration?

Registry: important for measuring outcomes in acutes. But what I’ve heard of the registry it doesn’t follow people past two years. I’ve also heard that includes a lot of demographics without follow up at different stages.

Actually registries done by EMSCI and NACTAN are enough to monitor the evolution of patients with SCI? Why is work being duplicated as no one can see the difference between people with SCI in America or Europe.

which is anticipated to help answer a number of research questions related to the cure, to alleviating secondary complications, and other areas. As part of RHSCIR, a survey of people with spinal cord injury was conducted to assess their readiness and willingness to participate in stem cell clinical trials. So this one activity within RHSCIR was aimed at the cure for chronic SCI, but it is not possible to budget this out as it is part of the larger RHSCIR project.

This was a survey, not “aimed at the cure for chronic spinal cord injury.” Also, a lot of work is going on without cells. Why the focus on cells?

What was the point of a survey like this? How can you ask people if they would like to undergo some non-defined procedure? Who would agree?

Similar types of activities are carried out within other RHI projects, such as our Access to Care and Timing project and others.

Important, but in no way aimed at chronics.

__________________________________

Q: What research was done in regards to question one above?

A: We define cure as reduction of paralysis and restoration of physical function post injury.

Very broad definition of cure. Any little improvement is not cure.CDRF is also involved in this kind of thinking.

The definition of cure is very simple; after medical treatment, the patient no longer has that particular condition anymore. http://kidshealth.org/teen/your_body/medical_care/curable.html　

You cannot redefine the meaning of cure so that even moving a toe becomes cure. That is not cure, it is moving a toe.

If we are strictly talking about neuro-regeneration and neuro-protection, we currently only have a handful of projects. Based on our definition of cure(s), more than half of our projects deal with reducing paralysis and enhancing physical function. Specific projects include: Access to Care and Timing, CAMPER, FES and ReJoyce, for example, could fall within the category. In addition to time into surgery and stem cell transplantation, RHI’s activities in fiscal year 2011-2012 oriented towards reduction in paralysis also included support for two multi-centre trials examining potential neuroprotective agents: riluzole and minocycline. In fact, since 2007, RHI has supported fully half of the Canadian-sponsored clinical trials on SCI.

OK. In your handful of  projects which ones deal with neuro-regeneration and why didn’t you mention them here.

Reducing paralysis and enhancing physical function is not cure. Specifically, how does Access to Care and Timing, CAMPER, FES, and ReJoyce cure chronic spinal cord injury? None of these are a biological answer to cure and only offer very limited functional improvement, if any, in chronics.

Both of riluzole and minocycline are 100% for acutes.

Yes of course they have done clinical trials, but saying “clinical trials” is not the same as “clinical trials for cure for chronic spinal cord injury. Adding this just confuses the situation especially is not one clinical trial aimed at chronics is mentioned.

We are strictly talking about a cure for chronic SCI which means recovery of functions like breathing, hands, bowel, bladder, walking..

__________________________________

Q: What are your future plans for both spending and research for a cure for chronic spinal cord injury in the near future.

A: RHF and RHI have recently received a commitment from the Canadian government for the continuation of its programs. RHI has submitted a new five-year business plan to guide activities towards meeting its objectivesusing these new funds. 

Since our questions are about chronics, why is there nothing mentioned specifically about chronics?

Given all the work conducted by RHI and others, Canada has a unique opportunity to host clinical trials for SCI, due to greater consistency in SCI care across the country. By supporting a network of clinical researchers, creating an infrastructure for clinical trials in SCI, standardizing care, enabling standard measurement of patient outcomes, and creation of a patient registry, RHI is making it possible to trial new treatments for acute and chronic SCI as they are ready for clinical trials, which is the goal we’re all working towards.  

Great. A lot of leg work may have already been done to get clinical trials going, but now the clinical trials have to start.

Standardizing care is not part of this for chronics. It’s just added in and again confuses the situation.

Measurement of patient outcomes. Is this through the registry? I don’t understand the importance of this for chronics, especially complete chronics.

There will be very few clinical trials for chronic SCI in the future because very few labs are doing chronic SCI research and that is also because orgs like RHI/RHF failed to direct founds restricted to chronic SCI research.

(RHI’s fiscal year ends March 31, 2013, so we’re currently wrapping up a number of projects started as far back as 2007. Details on new projects will be available in the new year).