Time to get off my butt! Literally, I hope.

It's been over a year since I took some time off to try to get control of my pain as it was getting in the way of any kind of cure work. Well, another operation and three weeks in pain management rehab and I’m back. I haven’t yet beat the pain, but I guess if I don't get off my butt now, I'll never get off my butt in the future. I have the same premise now that I had when I first started and it's that if we, those living with paralysis don't get involved, we'll never cure chronic spinal cord injury.

So, here I go again...

Sadly, after such a long absence, there are now many new people living with paralysis that I haven't yet had the chance to meet, so I feel that I should start with a brief introduction.

My name is Dennis Tesolat and on 12 August 2009 I suffered a spinal subdural hematoma caused by an AVM. An easy explanation (because it’s quite rare); I had a bleed in my spinal cord and the haematoma pressured the cord and left me a paraplegic. I started this blog while I was still in rehab and almost immediately I started meeting many other cure activists from all around the world who I worked with regularly and were an enormous help and encouragement to me.

I never intended to set up my blog as a “Dennis speaks” type thing because who really cares what Dennis says and, "Who in the hell is Dennis to speak anyways?" My goal has always been to involve myself in getting others involved by organising people to improve transparency and information exchange in the cure process and building urgency for cure. These are the areas that I think I can best contribute to.


While I wasn’t always successful in my campaigns, I was able to include people all over the world, and I know from many sources that we did make an impact. Have a look through the blog's archive for some information on the campaigns I was involved in. 

As always, I'm relatively hopeful about the advances in some of the science and this is a good summary, but I know that with the voices of those of us living without paralysis, a cure will continue to evade us. Oddly enough, I've never considered the science to be the main obstacle.

So what do I think are the main obstacles?

I think, and I know that many concur, it is a failure of government to not only fund science, but to lead the process. In short, we are missing a road map to cure, and the only group around that can bring all the players and pieces together is government. While governments do provide a lot of the important funding, they have basically outsourced their responsibility to massive foundations, universities, and the private sector which have no accountability to the people living with paralysis. Other smaller groups, with often wonderful intentions, are then left to scramble for the remaining government funds and compete for private donations.

I see a lot more cooperation and collaboration amongst scientists than I did six years ago when I started, but COORDINATION is what will bring cure, and that I believe is the role of government acting on our behalf.

So in concrete terms what role would I like to play? I’m not a scientist, but I think I am good at analysing logistical and economic issues, and bringing people together to affect change. I would like my role to be in investigating what is going on in the world of cure and why it continues to evade us. I want to gather up all our voices in order to get the answers and information we need. 

These are the current therapies that I am interested in getting more information on.

• Epidural stimulation and specifically the current trials being run by the Christopher and Dana Reeve Foundation (CDRF). I love the name of this programme, “The Big Idea”, and I love the feeling they are trying to create about their work. This is the passion that I think is often missing from CDRF. While I’m not convinced about epidural stimulation, I am always willing to be convinced. Specifically, I am interested in getting more information in your hands about some of their important claims about bladder, bowel, and sexual function.
• Chondroitinase (aka ch'ase) and the work being done by Spinal Research in the UK and the Jerry Silver lab. Personally, I think that the work around chondroitinase is the best tested and worked with avenue to cure. It’s been played around with for a couple of decades. What we need to know now is what the plan is. Something this important requires more transparency so that we know what WE can do to move things along.
• In 2014 the papers blared with the story of a paralysed Polish man who had a positive outcome after being treated with olfactory ensheathing cells in a research carried out by professor Geoffrey Raisman in the UK. Since this time, we’ve heard very little about what the plans are for the future. 2014 was two years ago and seeing where this exciting research and further clinical trials going is a must for our community.

Also, as before, I want to continue researching how funding works and what we can do to; increase funding, make funding more goal driven, and make sure funding isn’t wasted. 

Many years ago in rather nasty attack from Shawn Friedkin, acting a surrogate for the Reeve Foundation, I was told by him that, “quite frankly we don’t need accountants to find cures…we need more scientists and more funding.” Me, I don’t think that just money and more scientists will lead to cure and I wish to explore how we can improve funding for spinal cord injury cure. If funding isn't used wisely, it will be lost.

Most importantly I want to investigate what I consider to be the political solutions to cure and how we can organise ourselves to have the most impact.

I think that the name of my blog, StemCells&AtomBombs sums up my views about this part quite nicely.

If you want to build an atom bomb, or put a man on the moon, government is the only agency with the money and coordinating power to do it. They didn't make the bomb by throwing around money to individual scientists and foundations in the hope that a bomb would be made. No, they centralized both the resources and the science and made it accountable to leadership.

For that we need leadership and that’s where you and me come in. We need to raise our voices to get this leadership. I’ve said it a thousand times; if you don’t have a lot of money, then you need a lot of people, and my goal is to get us together to demand the necessary leadership, and to demand that money and work that is currently being done is accountable to us. Only us, the people that live the nightmare of paralysis can give it the urgency it needs to make cure a priority.
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Are there other areas of research that you’d like more information about? Are there other pressing things that you think we need to know? I’m open to any decent project and more collaboration with others.

That's a pretty big list and I what I hope for most is that I don’t fall away again due to pain and that I can be there at the end of the cure finish line with you.

Help us win 50K EURO for SCI cure

Just in case you trust me, I'll cut to the chase.  Like this video and you'll help us win 50,000 euro to cure chronic spinal cord injury. 

For those who want to know more, here it is.


The EndParalysis Foundation, run by Corinne Jeanmaire from the Netherlands, has entered into a super exciting competition with a first prize of 50,000 euros.

The EndParalysis Foundation works solely to fund research aimed at curing chronic spinal cord injury. If they win, this 50,000 euro will go directly towards funding the UK's Spinal Research 'Chondroitinase' project. It is super exciting research which is focussed on getting people out of wheelchairs.

So, to win, they need YOUR votes. And to vote all you need to do is like this video on FB. To vote, you must like the video, NOT the page. ONE LIKE = ONE VOTE

The video is in Dutch, but you can also watch it with English subtitles below, but please be aware that you need to like the Dutch video on Facebook to vote.

Please share this information with your friends and encourage your contacts to like the video. 

Don't use the facebook share to post to your timeline as people must go to the link and like it (not like your share on your timeline).

Many thanks for helping us!

EndParalysis from EndParalysis foundation on Vimeo.

Send FAX & email to Minnesota to support money for spinal injury cure

I know I said that I wouldn't be back until 1 October, but I received a special request from cure activists in Minnesota asking for our help, so here I am. 

And now here you are too, and I'm going to make the same special request to you and I need you to spend literally just a few minutes to make sure that Minnesota passes $8 million dollars for cure research for spinal cord injury and traumatic brain injury. They've been at this five years and need your support for them to win this year.

You can do this by following the link below to send an email (to Rep. Knoblach, the chair of the Ways and Means Committee) & a special fax (online & free) to the governor to ask for their support in make sure this research money passes.

There is some more information below and you can go to both www.gusu4cure.org (these are our Minnesotan friends who have been working so long and hard on this) and read this story in the Minnesota Star Tribune, but we need you to send your fax and email immediately. Only one week left so please do this now.

Campaign is now finished. Thank you.
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MN Spinal Cord & Brain Injury Research Grant Act (MN is the way Minnesotans say Minnesota)

We are requesting an $8 million dollar annual appropriation from the state budget as an economic development plan to fund innovative research towards deliverable therapies for the functional improvements of those living with Spinal Cord Injury (SCI) and Traumatic Brian Injury (TBI). This effort is inspired by the recent and significant advances in the field, along with the challenges faced by the 118,000 Minnesotans living with these disabilities.

WHY?

•We believe that current market forces are not sufficient to respond to the recent research breakthroughs.

•The NIH funds only 10% of all applications. As the major source of funding for medical innovation this leaves many excellent inquiries unfunded

•Research spending in this field has primarily been for continuing care and rehab, not for strategies to deliver functional improvement. Considering the enormous costs of care for those living with SCI/TBI, these priorities are out of alignment.

•Lifetime costs of care for individuals range from $1.5 to $4.6 million

•Annual costs of care for SCI in MN is a little over $520 million while the exact figures for TBI are yet unclear.

•Treatments involving devices and regeneration for SCI/TBI are emerging from the states where it is being funded. Why not here?

WHAT’S THE RETURN ON INVESTMENT?

• This investment would create jobs and attract highly trained neuroscientists and researchers to Minnesota and into the field of neuroregeneration and novel medical devices.

• There is a strong correlation for state funded programs to attract increased NIH funds, given the 10% award ratio listed above. For example, California generated $15 million in state funds, which leveraged $86 million in NIH federal funds, over several years.

• The grant program would push research forward by providing seed money for therapeutic innovations, novel medical devices and needed funds to drive existing lab research to clinical trial and onto industry for treatments, resulting in bio-tech spin-offs.

• By moving the research to clinic, MN would see an enormous reduction in the costs of care for those afflicted with injury. Any improvement to the consequences of these injuries, or recovery of breathing/bowel/bladder/sexual function, mobility, memory and cognition would have a significant impact upon quality of life and employment.

Yo Dennis! Whatever happened to fighting for a cure?

Hello. It's been a long time.

No, I haven't forgotten about you or paralysis cure, but like many of you, I continue to be one of the many victims of paralysis.

I continue to get many emails asking what I'm up to these days. I know these emails are also small reminders that I haven't  been doing anything lately. The title of this post will quickly be recognised by one one of my cure-comrades-in-arms as she wrote me this one line email a few weeks back.

I must say that I am grateful for still being remembered. I still get regular likes on StemCells&AtomBomb's Facebook page and messages to my blogs. This does give me pleasure in knowing that I at least had some impact and offered hope. These messages also get me down because it reminds me that I'm not doing anything at the moment and therefore, according to my own judgement, I am part of the problem.

I'd like today's post to be both an apology for my failure to keep up the fight for paralysis cure and an explanation about my future commitment.

One. No, I have not given up on the idea of a cure for paralysis.

Two. I still believe that non-scientist members of the paralysis community can play an important role in a cure for paralysis.

So, where in the heck have I been? You've probably heard me say that "paralysis cure is not just going to fall out of the sky and bite us on our collective arses", so why aren't I doing anything about about it like I once demanded we all did?

The answer is one small four-letter word that doesn't start with F.

PAIN!

Before paralysis (BP) I had basically two jobs. I'd say one full time job as a teacher and a ¾ job at the union. I sometimes wonder How I did it. After becoming paralyzed (AP) I figured that I'd quit teaching (too many schedules when You're a teacher) and just concentrate on the union and cure.

It worked out for some time, and then the pain got terrible after having an operation for syringomyellia. Since that time it's been downhill to the point where I can't do both cure and union because now PAIN has become the other full time job.
I don't even know How to describe it other than to say it has slowed me down terribly. Three hours to get out of bed and then another few hours to use the facilities and get ready. I feel like I'm in slow motion. I still can handle two jobs, PAIN and union, but a third, CURE is a little too much for me at the moment.
Sure I could write blog posts, but seeing that my blog was never just a "Dennis speaking to the world" type blog and was rather about campaigning and motivating people, I don't see the point in writing. I Actually have two campaigns almost ready, but I can't offer the physical commitment so I've  put them on hold, and feel really badly about not doing that.
Feeling bad about not doing cure work has gotten to the point that I won't even read about it. You'll notice that I haven't been on CareCure for a long time. In Dennis' mind there is NO sense just reading and knowing things, you must DO something about it.

So, since I hate not doing cure work, I'm going to make you all a promise. This way here I'll have a target and won't feel that I've just let people down, and also won't feel like running away from everything cure related in the meantime.

My promise.

I'll be back on 1 October one way or another. The first way is that I'm going to be much more aggressive in dealing with trying to fix this pain. I'm on a trail to the pain and think I may know what it it is. So if my current doctors don't listen, I'll be going to a different doctor
Secondly, if I don't beat this pain, then Ill need need a partner for my blog campaigns. Interested? Keep me in mind.
Once again, I thank you for your encouraging messages and I apologise to everyone of you that I've  let down.
It's good to set a target and slowly reinvolve myself. See you 1 October and if you have any ideas for new campaigns, let me know.

Thanks.