I'm writing to the Governor General, and I'll tell you why in a second.
24 August is the start of the Rick Hansen Relay which marks the twenty-fifth anniversary of his famous world tour to raise awareness and funds to improve the quality of life for those living with spinal cord injuries (SCI) and to find a cure for paralysis. This relay which will transverse Canada starting in Newfoundland and ending on 22 May in Vancouver, British Columbia should also commemorate the great work that Rick Hansen has done for all of us with SCI.
But I must admit that I am disappointed by the Rick Hansen Foundation's (RHF) unwillingness to have dialogue with those living with SCI.
Many people wrote to the RHF's new CEO, Art Reitmayer, to ask for information on the foundation's spending on central nervous system (CNS) regeneration, i.e., a cure for spinal cord injury, but we didn't get an answer to the question. We did this twice hoping to get some answer and when our questions couldn't be answered, five of us even wrote asking for a skype meeting to discuss our questions 'in person'. We got an email back, but the request for dialogue was just ignored. You can see all the correspondence here.
I have to admit that at first I thought a skype meeting was a little nuts, but then I saw a lot of other groups who have real dialogue with people using today's technology. In fact, I got two such emails just this morning. Both were from the California Institute for Regenerative Medicine. One was for a webinar on scaffolding (like building a bridge of the lesion in the spinal cord), and the other one was for meeting the new chairman of the institute which you can do by telephone. This is dialogue and it's easy because of the great advances in telecommunications.
So, I think it's time to write to the Governor General of Canada to see if he can help us. The Governor General is the patron of the Rick Hansen Relay and maybe with his intervention the Rick Hansen Foundation can find a way to have dialogue. We don't wish to just sit, cheer, and donate. We want real dialogue leading to real information, because we all share Rick Hansen's internationalism to build 'a world without paralysis after spinal cord injury.'
A skype meeting, a real time Q&A using email, a webinar, anything that is dialogue is fine with me.
Please fill out this short email and it will be sent directly to His Excellency, The Right Honourable David Johnston, Governor General of Canada.
If you can't see the email below, please click here.
after evaluating the treatments from the researcher's website you do most of your posting on, I think you would do better asking him to stop offering useless frivolous treatments. What good does it do to send money that is helping us and use it to get more useless treatments?
ReplyDeleteShow me! yes show me you see the fake hype and see the frivolous treatments that become money makers for biotech and their academia(????) researchers! Presently you are asking for funds to help a group who is only after lining their pockets with money from low hanging fruits which are fast trak meaningless therapies. An asute researcher knows the system and will get crap approved: Long experience in clinical trials have shown that people’s attitude towards the therapy can make a big difference in the response to the therapy. Even if the therapy doesn’t work, people often will have a good response to the therapy because they believe, want to believe, and may be desperate to believe that the therapy works. Wise http://sci.rutgers.edu/forum/showthread.php?t=122016 Why not just give placebos? And save tons of dollars!
ReplyDeleteDo I think we can cure sci? When I see the amount of technology in my cell phone I wonder why sci hasn't been cured already! But, if we drink the koolaid from biotech who very well knows we would purchase the crappy treatments whooo hooo! wiggle your toe! Hey was that placebo or treatment! Dennis until you clean up biotech and even the caring Wise Young, you are wasting your time fighting Rick. Wise talks about a cure that a person couldn't tell u had a sci yet his acorda got a shame treatment approved that 1, doesn't stop the progression, 2 couldn't beat the placebo and you want rick to invest in more of that? Are you drunk?
ReplyDeleteIt's so easy to beat on Rick the happy crip! While you let sham treatments unexposed! That's not good.
ReplyDeleteWise is your mentor and he did crap. Not one of his 2 approved treatments work! Methylprednisolone nor Ampyra! And think about all the lawsuits that arose because some one wasn't treated with MP! What a waste, and think about the hundreds of millions Ampyra brings in and it can't beat a placebo! And your hero wise said thats why we need trials to show something works! u better stop picking on rick hansen and start picking on Wise Young!
The truth is, not to pick on Rick Hansen, but to show the fowl researchers using meaningless low hanging fruits. That bring in billions and can't beat a placebo! That's where the story is, not Rick Hansen. Yes even I want a cure, but I see the scum and yes they are scum for pushing crap treatments. There I said it! Wise pushes crap! Even won't give in to peer review that says Steroids don't work!
ReplyDeleteNo matter how much money is set aside for a cure why should it work when Wise shows he could get crap treatments approved. Stop blaming Hansen!!!!!!!!!!!!!!!!!!!!!
ReplyDeleteI want an answer from the one who attacks Rick and lets researchers like Wise screw us!!!!!
ReplyDeleteWhoever you are, would you stop with the "Leave Rick alone, pick on Wise!" already?? It's very annoying to read and your tone does nothing to help your case.
ReplyDeleteI'd like to learn more about the RHF funding no cures and how the Govenor General of Canada can assist with getting the funding in place for clinical trials. I'm tired of the same person posting silly trash about every subject BUT the task at hand. Stop posting your personal little war/vendeta and help with getting the large sci orgs to fund therapies and clinical trials!
ReplyDeleteI'm interested in a cure for paralysis and I'm happy you have been writing to the Rick Hansen Foundation regarding it's financial commitment to CNS regeneration. Keep up your wonderful work so we will be able to receive a satisfactory response and get funding towards a cure. I hope you continue to focus on this wonderful effort! GREAT JOB!!!!!!!!!!!!!!!
ReplyDeleteIf we keep constant pressure on Rick he can't avoid to direct money to real research for a real cure in the future.
ReplyDeleteThe original anonymous!
ReplyDeleteDon't you see researchers trying to get your support and they already know we would be thankful just to even be in a trial.No matter how good it is. And such a supposedly state of the art researcher became famous from a flawed treatment and continues to preach the gold standard of clinical trials and evidence based medecine and again gave us Ampyra which couldn't beat a placebo! I'm pissed at the ones who bow to researchers, BTW there is a video, Bow to Wise. How the hell will there be a cure if we allow snake oil from so called legitmate researchers? Are you so hopeful that luck will prevail? The spinal cord needs more than luck and hope
And to those who want cure and not care! I could agree to that if we were close to a cure, but we are even further than I thought. And the snake oil is all you will get as long as you bow to researchers that are only interested in marketing crap. Yes crap. Those researchers want to make the money those offshore clinics are making. And they are using the FDA to endorse the crap, like they did with Ampyra! And they try to tell you in the same breath their treatment is evidence based!!!!!!!! Yep and Ampyra couldn't beat a placebo but they argued it shouldn't matter, How cool is that!They spend so much time denouncing offshore clinics and then push crap just as worthless!
ReplyDeleteCure lovers, show me how it isn't just you acting on the hype? That there really is a cure moments away! And, tell the people that need daily assistence they shouldn't get it cause you like the promise of a cure! I'm sure if there was dam good odds a cure would be available Rick would invest in it. So far all I see is crap that couldn't beat a placebo and Your cravings will only get you more of the same. Such desire will not get a cure, but show biotech and their researchers you'd settle for crap. Wake up and smell the poison out there!
ReplyDeleteTo: Original Anonymous, You're fighting the wrong battle at the wrong time. Can't you read simple english? The question is: Why is Rick Hansen collecting money in the name of CURING SCI when he doesn't put a single penny into research?" It's a no brainer dude!! READ IT!
ReplyDeleteThere never will be a cure as long as people are happy being in chairs and are "taken care" of by Rick. That's YOUR dishonest hype! If you don't want a cure, then get lost and stop bitching...Sit back and enjoy all the care you can get from RHF and be thankful since he's done so much for ya! Rick Hansen will continue to line his pockets and keep you taken care of for a lifetime. You're the one that is settling for CRAP my friend!!! Rick Hansen IS your PLACEBO!! So, go enjoy it! He's hasn't done a thing for me or anyone else that is seeking worthwhile research or a cure. That is what worthless is. Wake up and smell your own poison dude. Cripes, you can't even figure out what the real issue is here with all your postings of snake oil wars and vendettas. Lord, Rick's had 25 years to invest in cure research and you honestly think he's gonna give up some money to fund a cure anytime soon without public pressure? That's so silly, it's actually sick.
To Anon Orig...There's lots of researchers working on a cure. Nobody has been successful yet in producing a 100% golden cure. If you're gonna be a cry baby and whine about every researcher that hasn't cured you yet, then Rick Hansen is your man. Send him your money for his "Round The World Trips and huge salary so he can tell you for the NEXT 25 yrs that he's funding a cure to help you. You'll obviously buy any foolish propaganda if you really think ole Rick has a cure just around the corner for you. Are you really stupid enough to sit in that chair for the rest of your life and send him money for a cure when he doesn't fund any such thing? Just by your posts, I can tell you have no background or knowledge of the actual research that is taking place around the world. You're living on your own little battlefield and I don't think you care a thing about a cure. Why even come here and post your silliness? You need some serious psych help man!
ReplyDeleteStemCellsandAtomBombs, thank you so very much for bringing awareness to the need for funding research for spinal cord injury. Perhaps a cure will be found soon if funding is directed appropriately and not wasted on so many other projects like depression after SCI or cathing and UTI's. There would be no need for paying for these issues to be studied if funding towards regeneration of the spinal cord takes place. Thanks for bringing awareness to the Govenor General of Canada. Upward and Onward!
ReplyDelete"You need some serious psych help man!" throwing money at biotech that can't beat a placebo is insane.
ReplyDelete"Perhaps a cure will be found soon if funding is directed appropriately and not wasted on so many other projects like depression after SCI or cathing and UTI's. There would be no need for paying for these issues to be studied if funding towards regeneration of the spinal cord takes place. " You drank the kool-aide. At best any treatment in the next 5 years won't beat a placebo, yet it will be played up as a rigorous treatment showing a few wiggle their toe and would have from the placebo anyway, so on that basis we should get uti's and send money to snake oil research? If it wasn't for care many of us wouldn't even be here today. Read between the lines how a world reknown researcher promises a cure that you couldn't tell the person had an sci, yet was founder of a company that is currently marketing a money maker that couldn't beat a placebo. and the 1/2 second increase in walking speed in a 45 second walk??????? shame on them!!!!!!!!And it didn't beat the placebo!!!!!!!!!!!thats kool aide
So u rather dismiss the notion of crappy treatments and think low and behold a cure is in the works and give up on care? You would be only putting money in the hands of biotech which is profit minded and they are interested in money only, wow!!!! They even have researchers on the payroll to sell their crap and your efforts give them steam! That kool aide is gonna put us back not forward! Yep unplug the vents and send money to the crooks! When the FDA approved ampyra it should have sent shock waves. Don't forget I warned you when you pay millions for a sham treatment like ucb and lithium! I mean how many times should we allow crap! Hey I with you in wanting a cure and I know it's possible but let's get real.............Didn't we see a researcher offer enough low hanging fruit that doesn't work?
ReplyDeleteIt's a dam shame Wise Young with 2 treatments that don't work still has his base. Yeah he talks about treatments that one couldn't tell you were sci'd yet sells treatments like methylprednisolone which are no longer the standard of care, or Ampyra which can't beat the placebo! Show me otherWise! Yep devote all funds to cure for frivilous treatments, unplug the vents, no wheelchairs, no caths and get Young another vacation home. You cure warriors are just gonna screw things up. But you will make Young and some other researchers smile. Disgusting
ReplyDeletefrom a brave poster on Wise Young's website today:
ReplyDeleteWindingdown
Junior Member
Join Date: Aug 2011
Posts: 1 MY Friend Art wrote on my LDN support site. a letter from Dr Skip the pharmacy guru
Art says, I use 4-AP for my MS, it helps me a bit with walking, I get it from Skip's Compounding Pharmacy via prescription and pay approx. $40. for 120 5mgs capsules. Skip's email below is a good example why I fear LDN being approved as a treatment for my disease. Price gouging. - Art
Skip Lenz on the prescription 4-AP
For those of you waiting for the "new" and "improved" 4 ap. Well sit down, the price for a ...30 days supply just came out. $1056 for a 30 day supply. I am once again embarrassed by my profession. The cost of goods is less than $20.00. I can understand them wanting money for their clinical studies, but this is Bovine Feces. I would recommend that no one buys it. Let them go out of business. "I am fed up and won't take it anymore." These folks are bottom dwellers of the worst kind. They didn't discover the drug. We have been compounding it for over 10 years now. They didn't discover the s/r formula that has been available for over 20 years. They did the clinical studies on a drug they already knew would work. DUH. Now the FDA has given then 17 years exclusivity!!!!!!!!!!!!!!!!!!!!!! and who is going to pay, YOU ARE!!!!!! You cannot believe how pissed off I am right now.
Okay so you say the insurance companies will pay for it. WHO IS PAYING THE INSURANCE COMPANIES BILLS-YOU ARE. Maybe medicare/medicaid will pay for it. WHO IS PAYING MEDICARE/MEDICAID BILLS- YOU ARE.
Now I am a capitalist. I believe in making a profit. BUT THIS IS NOT A PROFIT THIS IS RAPE OF EACH AND EVERY ONE OF YOU . How dare these people take advantage. Well screw them. You take your chances when you compete, show them how competition really works. Don't buy it. Let them keep their drugs. Don't let your doc rx them to you, tell the doc you are happy right where you are. Tell your senator tell your congressman/woman. tell your governor that they shouldn't have this on a formulary.
Okay, I am so pissed off I am going to get myself in trouble. MFCSPFB!@#$%^&*()_+. pass this email along to who ever you want. I am gunning for these guys now.
Dr. Skip
I wanted to post this so everyone can do something.. Im not sure yet but if someone comes up to you asking to sign something taking away the BIG PHARMA rights stealing patents and money.. PLEASE DO IT!! COME SEE US at my LDN support site to voice your opinion, GOD BLESS
They offer crap, charge a fortune and we should take people off vents and caths for this?????????????
ReplyDeleteThe 4ap/Ampyra is not designed for taking people off vents and caths. Obviously the poster still knows NOTHING about the science. Requesting the Rick Hansen Foundation to help fund worthwhile research for curing spinal cord injury doesn't have anything to do with the work being done in China either. Clearly you cannot understand this discussion is not about some pharma company or a certain researcher of your personal vendetta and slander.
ReplyDeleteEvidentally this silly nut can't read english or follow the discussion. Contacting the Govenor General of Canada to initiate research funding for spinal cord injury is a fantastic endeavor. Let's all hope your work is successful and the world has Canadian help in curing the entire world of SCI!
Yeah ampyra don't do shit! you want more of that?
ReplyDeleteWhat, you think RHF is in the market to purchase a U.S. biotech company now? Your conspiracy theory is insane dude! Let me guess, the Govenor General of Canada is plotting to sabatoge future sci clinical trials too so we shouldn't ask him for research money. Dr. Skip Along will then fly down in his rocket ship and save planet earth from insurance companies and all the mad scientists of the world by inventing a miracle cure with vitamin c. You'll be buying stock in the (Right)company then. You'll be wealthy and cured from your Prozac addiction by then.
ReplyDeleteWell, the crazy dude can be a happy crip with Rick. But, the rest of the world wants a cure for SCI. It doesn't make any sense to not invest in science and follow the wonderful research that is being done throughout the world. If you don't want cured, then nobody will shove that cure down your throat. Stay paralyzed and scream on every street corner about a conspiracy that keeps you in your chair. The loss is yours to relish in, but the rest of us will work towards a world without paralysis. You can develop a blog for the RHF website about conspiracy theories. Did you tell Rick you wanted the job?
ReplyDeletehttp://www.skipspharmacy.com/wplog/pets-vets/
ReplyDeleteThe site advertisement for Dr.Skip pharmacy guru. He compounds drugs for dogs. He's really gunning for big pharma? Hysterically funny.
Skip is mad because he lost business when Ampyra was finally marketed. There isn't a need for 4-ap to be compounded at his pharmacy anymore. Acorda and the insurance companies cut into his profits. He's just left with compounding drugs for dogs and cats. Check out his website if you need compounded drugs for Fido and Spot.
ReplyDeleteI think a spinal cord injury is just a little beyond an internet pet medication company or self ascribed drug guru guy. Heck, I can call 1-800-pet-meds and not even bother with a screwball like that. Wow, like he's gonna take down big Pharma by sending looney emails out to the interent? He needs his license pulled if these crazy emails actually come from him. Even RHF would never stoop so low as to purchase a pet med company like that and try to sell it as a cure for SCI. Its absurd. I agree with the previous poster that said there's a Prozac addiction problem. Crazy stuff that reads like a cartoon.
ReplyDeleteWho's crazier? The guy addicted to Prozac, or the pet med guru? Why are they looking around internet sites about spinal cord injury? They really think a big pharma is going to steal their patent and they want us to use their animal pharmacy for this LDN junk? Seems like a stupid advertising gimmick to me!
ReplyDeleteLets hear from the Govenor General of Canada on what he can do about setting up initiatives for curing spinal cord injury. The Canadian people deserve his input and help in funding for research. We're on the cusp of promising research being done and we now need help with funding to take these brilliant discoveries to clinical trials. Let get this done in Canada! We must put a stop to people collecting money for a cure when they don't sponsor research or these wackos that appear with promising help from drug guru that sells pet meds.Go Canada!
ReplyDeleteAnd who tells you we are on the cusp? This blog brought out a important point, people want a cure and Rick Hansen banks on that for donations, so do researchers and they are so far away from a cure!!!!!!!!!!!!! We are being used, and I bet you couldn't do better, even if you could send money to research for a cure, at present it's so much hype and Hansen would be wasting meaningful bucks if he gave them to cure. I mean look at Young's record! MP after years was disqualified, Ampyra couldn't beat a placebo, but thanks to our corrupt system it brings acorda 200 million plus a year! You want more of that? You guys should sue biotechs and Wise. You pick on Hansen, but the real issue is there is no current work going onthat will lift you out of your chair, so blame it on Hansen!!!!!!!
ReplyDeleteDon't expect a cure from those researchers who hype it. They should be the ones you Target, not Hansen. Or is Hansen responsible for fake researchers also? Yep its Hansens fault for not having a reasonable treatment to invest in. Isn't it time to sue wise young? How much longer will his bullshit last? Promising cures and offers crap. And so costly
ReplyDeleteHate to say it, but look at the best so called researchers record, it sucks, and he only wins you over with hugs and fake promises!!!!!!!!!!!!!!!!!!
ReplyDeleteShow me I am wrong!
Just the other day he said ampyra was a substantial treatment, yep couldn't beat a placebo. You want more of that?
ReplyDeleteHey Dennis, you voided my comment cause it showed acorda sold a treatment a pet pharmacy made for a fraction of the cost!!!!!!!!!!! Dam you guys kiss ass and are only helping companies like acorda make money on crap!!!!!!!!!!!!! What the f did acorda do other than get a fake approval from the fda! So Acorda is ok! you don't mind they sell crap for so much money and it can't yet beat placebo!!!!!!!!!!!!!! And your brothers poke fun at skip!
ReplyDeleteYou bastards won't get cured until you stop allowing crap like acorda which yes a dog pharmacy like SKIP"S made 4ap and a freaking scum company like acorda took it and is selling it for thousands more!The joke is on you for allowing a biotech to screw you! What the f is wrong with you cure lovers, at least fight for a good treatment, but you show you fight for crap! which was already available at a fraction of the cost. What a joke we got ampyra!
ReplyDeleteYou wasting money and caving into false hope with Young! Even his steroids treatment is shit, so is ampyra. Next you will pay for ucb and lithium which will also be crap
ReplyDeleteIf you stayed away from a fraud researchers website you would have more credabilily. But Wise talks in the same breath on cord blood and lithium that one won't be able to tell you had a sci. I bet at best one might wiggle his toe and not from the treatment!!!!!!!!!!Hurts so bad he even has dollar a day!!!!!!!what a slime
ReplyDeleteWhy are you always posting about Wise? It seems that if this blog were about cats you'd still find a way to include your rants. Go somewhere else or have you been banned from everywhere else?
ReplyDeleteYep, he's been banned on every site he's tried to post on. Folks get sick of his cocaine addiction. He's sick in the head.
ReplyDeleteYA, IT'S COCAINE BOB LITTERING UP ANYTHING THAT TALKS ABOUT A CURE FOR SPINAL CORD INJURY. COCAINE BOB THINKS EVERYONE SHOULD BE IN A WHEELCHAIR FOR THE REST OF THEIR LIVES. HE'S A TROLL THAT HAS BEEN BANNED OFF OF ALL THE WEBSITES THAT EVEN MENTION A CURE FOR PARALYSIS. COCAINE BOB NEEDS PSYCHO HELP. WACKO!
ReplyDeletePREACHER RICK on sunday morning..HEAL I SAY HEAL!!..then RICK stands up..LOL..Imagine all the sheeple then hurling the bags of money!!..give a rest rick!..arnt you rich enuff??
ReplyDelete