11 November 2013

A cure for chronic paralysis in Canada - we need YOU!

I think we've come a long way from writing questions to the Rick Hansen Foundation about chronic cure spending and getting no answers. I believe that we have finally put cure for CHRONICS on the agenda.

How many remember the first campaign back in 2011? One hundred names and no answer about cure spending. We took a lot of heat from some people about questioning RHF's commitment in dollars and science (not words) to a cure for chronic spinal cord injury, but in the end, a lot of these good people added their names to our last public campaign in mid 2012 to get us up to almost 800 names.

This blog isn't a trip down memory lane; it's to congratulate YOU for your perseverence because it finally looks like the times are a changing.

We have started talking to the Rick Hansen Institute (this body is the translational research arm) again and maybe their announcements have some good news for us, that may never have happened if YOU hadn't kept sending in your names and demanding a focus on paralysis cure, especially for those of in a chair right now.

1. RHI has set up an actual CURE committee. This will be comprised of researchers (still waiting on the names) and will be headed by Brian Kwon. I like Dr. Kwon because what I see in this video where the presenter tells us how Brian Kwon convinced her that chronic spinal cord models need to be used in research. Chronic, that's all of us who sit in our chairs right now. This is the first time we've seen a clear committee established inside of RHI to deal clearly with cure. 
The cure committee has already met once and we wait to see what they did in their meeting.
We've also asked for a chance to speak with Dr. Kwon and we hope that there will be good news to share with you in the future.

2. A Consumer Advisory Board will also be established. Consumer, that's us, people in chairs. The whole Board won't be cure focused, but we need to make sure that cure activists are involved. We need to make sure that when surveys get pulled out saying that we're not interested in cure, we can show them differently. 

We've now spoken with the people to be involved in the Consumer Advisory Board and we're waiting on some more information, especially on we can make sure that chronic cure activists are on this committee.

So, instead of just waiting around for RHI to cure us, we're going to remain, positive and proactive, following the pattern that has brought us success, and not waste our time debating those who think we haven't made any progress yet.

So, jump on in with both feet. Just like our past campaigns, only YOU can make this successful.
Fill in the form below to offer your suggestion for a name and if you're Canadian, to volunteer to help.


  1. I told you the cure is already in china, people are wobbling

  2. You should make people register if they want to comment or send faxes etc, just like U2F does, otherwise stop defending their behavior

    1. Hey trolls. Got nothing better to do?

    2. Nobody is defending a behavior troll. Stop your incessant hatred campaign. You're acting like an idiot. Find a different blog to vandalize.