15 replies to this topic

[topperf]

Hi guys and gals.

This is mentioned in a thread elsewhere on the site, but I thought this was big enough to have it's own.

www.endparalysis.com is now linked to the petition site, where more than 5600 people have signed their name to help make paralysis, history.

We are still working on a site with many more features, and hopefully it will be up and running soon -
until then, we are working to get as many signatures as possible with what we've got now (which isn't bad at all, but could be slightly better, just ask edlee )

So please, if you have an email list or anyway you can reach a number of people, facebook, myspace, twitter and the likes, help us make a difference and let people know we exist and need their help. post:

www.endparalysis.com where you can

Thank you.

Kind regards

Thomas.

Edited by topperf, 12 February 2009 - 04:00 PM.

[topperf]

The Hapa above all hapas!

I'm afraid this petition needs a genuine kick in the rear to get back on track.. But I'll give it one more go.
and I'll most definitely give a shout if I stumble upon anything out of the ordinary - you will be the first to know, Hapa!

And Netvetherapist, = What hapa said.

(and jackie, just a little confusion, please ignore my reply)

[jaquie_farmer]

haha ok. i signed the petition btw.

[stemcellblogger]

hi there, my name is bethuel burrola. iam a Nerve Therapist "I specialize in the Nerve System"
i treat people with nerve damages, like carpal tunnel, sciatic nerve, back pain, and so fore.
i think i mite have a cure to end paraplegic, but to conform this i need a paraplegic volunteer to see if i could.
iam asking you if you know any body in san francisco,ca usa or in california?
if so, pass on the word.
for more info on me go to www.nervetherapist.com
hope to here from you sooon.
--------------------------------------------------------------
When you learn to spell and use decent grammar, you might get more callers. If you can't spell the name of it, you should not be working on it or working with it. I certainly would not want you touching me if you can't even spell "intercostal" or "might" correctly.
--------------------------------------------------------------
I hear you bro!
and so fore? (forth)
mite? (might)
conform? (confirm)
paraplegic? (paralysis or paraplegism? is that a word?)
here? (hear)
san francisco, california or california? (um...)

now THAT'S a detail oriented therapist.
makes you wonder doesn't it?

[StillFingers]

I'm on the list Thomas #5660...one day we will find a cure

[topperf]

I think you're right Stillf - the harder we work on it now, the faster we'll have an option for those who's not injured yet, instead of ... Nothing.

[NSFcure?]

Hi everyone. I just wanted to tell you all that I have posted your YouTube video on my Facebook page. Although, I have lost my legs (frozen in a bent position) due to Nephrogenic System Fibrosis (NSF), not by a spinal cord injury. I am basically paralyzed. I do understand the hopeless, ummm, helpless feelings that you must endure. I cannot stand or walk and if I had a "chair" that raised it would not benefit me because I am frozen in a sitting position. I can lie down but my legs remain in an upside down 'V' position. Exactly like this - ˄˄ It seems like no one has ever heard of NSF. My disease will never be recognized in the public eye, never be a household name, much less be *continually* spoke of by anyone in medical or health field, but I hope your site 'brings' awareness of your disability to the world and the beginning of a cure. I support you.

Edited by NSFcure?, 17 July 2010 - 08:45 AM.

[stemcellblogger]

stemcellblogger, on 03 April 2009 - 11:13 PM, said:

JUST SO IT IS CLEAR, MY NAME IS DAVID GRANOVSKY AND I GO BY THE NICKNAME "STEMCELLBLOGGER" I TOOK ISSUE WITH THE FOLLOWING POST:

hi there, my name is bethuel burrola. iam a Nerve Therapist "I specialize in the Nerve System"
i treat people with nerve damages, like carpal tunnel, sciatic nerve, back pain, and so fore.
i think i mite have a cure to end paraplegic, but to conform this i need a paraplegic volunteer to see if i could.
iam asking you if you know any body in san francisco,ca usa or in california?
if so, pass on the word.
for more info on me go to www.nervetherapist.com
hope to here from you sooon.
--------------------------------------------------------------

THIS IS MY RESPONSE TO THAT POST:
When you learn to spell and use decent grammar, you might get more callers. If you can't spell the name of it, you should not be working on it or working with it. I certainly would not want you touching me if you can't even spell "intercostal" or "might" correctly.
--------------------------------------------------------------
I hear you bro!
and so fore? (forth)
mite? (might)
conform? (confirm)
paraplegic? (paralysis or paraplegism? is that a word?)
here? (hear)
san francisco, california or california? (um...)

now THAT'S a detail oriented therapist.
makes you wonder doesn't it?

I HOPE THAT CLEARS THINGS UP!
REGARDS
DAVID(STEMCELLBLOGGER)

[Ches]

Hey topper you know I am always up for supporting a cause, and always happy to sign ANYTHING for you..
But I remember last time we got the petition going, I heard someone say that online petitions werent a reliable source nor would they apply.. is that true?!

[StemCells&AtomBombs]

Does anyone know the status of www.endparalysis.com. I can't find a site for it.
Also, the petition seems to be sponsored by www.stepnow.org but I can't use their site to register to join.
Are these organizations the same? Does anyone have any information about them. I'd love to join and help but don't know how to reach them.

Dennis

[jenny407]

StemCells&AtomBombs, on 18 July 2010 - 11:18 AM, said:

Does anyone know the status of www.endparalysis.com. I can't find a site for it.
Also, the petition seems to be sponsored by www.stepnow.org but I can't use their site to register to join.
Are these organizations the same? Does anyone have any information about them. I'd love to join and help but don't know how to reach them.

Dennis

Post # 1: topperf - links.

[S&W Winger]

Uh-oh...signed again...had signed a while back...will the petition police come arrest me??




Topper, I'll put this back up on Facebook again also! How are you doing? I can't read your feed on FB since I'm a dumb American, where we only speak one butchered language...

[LeahC]

What's a petition gonna do lol!

[S&W Winger]

LeahC, on 19 July 2010 - 12:37 AM, said:

What's a petition gonna do lol!

Bring attention...for starters...

[chrisarnold6]

Hi,

I can understand LeahC's being skeptical. Being relatively recently injured, I can recall my perceptions of paralysis. I regarded it with I hope some compassion, but having sampled the real biscuit, I feel better informed. Most "laymen" think "too bad you can't walk, but hey wheels for shopping is great. Never mind locomotion, I have learnt about continence, or lack of it, neurological pain, spasms, and AD. Add UTIs to the list and you're still not done! The point is that few outside the experience of SCI fully understand and this applies to general hospital wards esp. pressure sores.

I suppose folks think that as SCI is not terminal, or progressive (not strictly true) and if patients can "get on with it", which I know we all usually do, then that's that. I think there are few who would not sign a petition. They will do it, and then forget it - I can see myself here too. Apart from the deviestating effcts of the injury, from a pragmatic view, a cure for SCI would ultimately knock billions of the health service budget. This would release much needed funds for e.g. cancer research, and genetically caused diseases like Huntingdon's Disease.

The best pressure we can exert is probably through the spinal units from which we came, by talking directly to the driver. I think this does noy happen much, because we all naturally wish to be independent and not appear to be winging ingrates.

Chris

[jenny407]

S&W Winger, on 18 July 2010 - 07:20 PM, said:

Uh-oh...signed again...had signed a while back...will the petition police come arrest me??

Topper, I'll put this back up on Facebook again also! How are you doing? I can't read your feed on FB since I'm a dumb American, where we only speak one butchered language...

Hi Bev, I do hope the petition police won't find you! (Me, I signed some time ago - but I still remember.)
Yeah, I also wondered about those Danish comments on fb ... Guess what! I found out last week that a friend of mine does in fact understand Danish! Ha. If she translates for me, I'll pm you. (Just hope it's nothing embarrassing - she is a lady.)