Author Topic: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding ?!  (Read 27616 times)

Katybarstool

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #30 on: August 16, 2008, 11:14:15 AM »
Kindandcaring

I don't know how to make a youtube video, but this is my bit of awareness raising, which is on the British Medical Journal
website.

http://www.bmj.com/cgi/content/extract/337/jul16_1/a280 (my bit is the rapid response).

It may be published in the hard copy of the journal next week. I will let you know if it is.

Kathyx




nisha

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #31 on: August 16, 2008, 05:43:33 PM »
kindandcaring and Sue -

We need to cut Steve Taylor some slack – he has been heavily tied up all this week, also last.   I will be talking with him about something else and will check. 

Be sure and let us have the link to your Youtube Video when you are done

nisha

« Last Edit: August 16, 2008, 05:50:26 PM by nisha »

nisha

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #32 on: August 16, 2008, 05:45:08 PM »
Steve -

I just warched you on Youtube!  Very good.  Hope a lot of people see it.  "Sjogren's Syndrome Saga" is not the easiest thing to say is it!  You did OK though.

nisha
« Last Edit: August 16, 2008, 05:52:03 PM by nisha »

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #33 on: August 17, 2008, 06:11:47 AM »
Hi Kind and Caring.....I'd love to see that you-tube video when you make it.   I just made my third one yesterday.
This will link you to it.
Steve
http://www.youtube.com/watch?v=kjW7wOPZ6ps&feature=email

Great work Steve..just watched your latest...you are a trailblazer...and an inspiration for the rest of us..!

Can you give any advice to anyone on posting a video on youtube !
« Last Edit: August 17, 2008, 06:36:21 AM by kindandcaring »

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #34 on: August 17, 2008, 06:15:05 AM »
kindandcaring and Sue -

We need to cut Steve Taylor some slack – he has been heavily tied up all this week, also last.   I will be talking with him about something else and will check. 

Be sure and let us have the link to your Youtube Video when you are done

nisha



Hi Nisha

Yep no I will not bother him for at least another week then......perhaps he is busy looking into the Vaccine.
Yet if you hear something please share.

Cheers

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #35 on: August 17, 2008, 06:35:44 AM »
Kindandcaring

I don't know how to make a youtube video, but this is my bit of awareness raising, which is on the British Medical Journal
website.

http://www.bmj.com/cgi/content/extract/337/jul16_1/a280 (my bit is the rapid response).

It may be published in the hard copy of the journal next week. I will let you know if it is.

Kathyx

Hi Kathy
Great work !!... you are making a difference a change for the better for everyone !!

I encourage you to try youtube..you only need a webcam or a digital camera or a digital video camera..though Im just as new to it probably as you..
I will try and find a video to help everyone know the how to of youtube...

Thanks again for your efforts Kathy ..Top Job !!!

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #36 on: August 17, 2008, 06:37:16 AM »
Youtube "How to Upload a Video"

http://www.youtube.com/watch?v=qFyIT7rVZ0Q


Katybarstool

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #37 on: August 17, 2008, 06:51:11 AM »
Hi Steve

Well done on your video. You really tell it how it is. I will think about doing one at some point.

Kathyx

Billydude

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #38 on: August 17, 2008, 07:02:56 AM »
Thanks guys about the video.  Hey....I'm not techo-savey at all.  I just use the camera setting on my digital camera.  I don't know how to edit or do anything fancy.   I'm obviously not all that techinical on my medical terms either.  I'm just trying to give some honest coverage of what is going on.    I just know that when I was trying to figure out what all my symptoms were I'd have found it easier to have found those videos from someone else.
Steve

jjj3

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #39 on: August 17, 2008, 05:02:19 PM »
Sue - In your discussion with Dr. Gene Watson, could you tell if he was optimistic that with all the new funding, there would soon be much more effective treatments or cures?

kindandcaring - do you know if the Faustman research through the SSF is in human trials?  I know the Diabetes research is in Phase I from the Faustman website, but I don't see any human trials for SJS.  I know it is supposed to benefit both diseases, but I'm assuming that it would have to be tested on SJS patients separately before being approved for us.  In your contacts with Steve Taylor, has he made any comments about the research?  Also, don't apologize for your passion.  Keep it coming!

As I write this, my right mid thigh has been twitching for over 24 hours and my anxiety is increasing as a result.  I'm really hoping that stress is causing this.  I have a number of CNS symptoms.  I'm hoping they remain mildly annoying and never become permanently disabling.  A cure - PLEASE!

Thanks everyone!
Cathy

Sjenny

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #40 on: August 17, 2008, 05:21:37 PM »
Nisha:

Don't worry, I'm not pestering Mr. Taylor - he's on our side!  Thus far, I've written one (1) email to the research dept. at the Sjogren's Foundation.

I do nag, but my nagging (naggery? - is that a word?) is judicious.

Cathy,

Dr. Watson indicated to me "that, (although there is no good time to have an autoimmune disease), this was the best time to have one as the NIH has been receiving a lot of funding to study autoimmune diseases" or words to that effect.

I see Dr. Vivino in September - I know he is recruiting candidates to research a new drug that alleviates symptoms like Pilocarpine without the side effects.  I will ask him what else he has on the back burner.

Steve - great video, very informative!

Best Regards,
Sue

jjj3

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #41 on: August 17, 2008, 07:50:54 PM »
Sue,

You are so fortunate to know two doctors with so much knowledge about Sjogren's.  Please continue to share what you learn from them.  I'd love to hear more about the possible new saliva drug.  I'm on Pilocarpine now and it only works for 1 to 1-1/2 hours.  I'm going to try Evoxac next in hopes it works longer.  Hopefully if another drug is approved, it can be longer lasting.  I hope Dr. Watson's statement proves to be right.  I'd love to see that funding turn into a substantial discovery.

Thanks again for sharing with us.  I'm having one of those days (weeks) where I just need to hear something hopeful.

Cathy

Sandra

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #42 on: August 17, 2008, 08:28:07 PM »
Hi just thought I'd share....I was a patient of Dr Bookman for a longtime, from about 2000??2001 to 2006. I began seeing him a couple years after I really knew something was wrong. I had to travel 2 hours. His bedside manner was atrocious. I would have been about 38 at the time. I remember leaving his office after the first visit and crying all the way home wondering what I had done wrong. He treated me like I was a head case and sent me away with no follow up appointment planned, no matter I wasn't going back. Only the phone rang 2 weeks later and i was to come back, his receptionist had to talk me into it, after all who needs  to be treated like that and to feel crumby all the time too. But I did go. He then told me word for word "I would like to tell you you have lupus, but I can't because it's bigger than that" You can imagine my confusion and fear. I saw him about every 6 months or so after that never knew if he would be dr jekel of mr hyde. Once he told me at about age 41-42 when I was having aparticularly bad flare-up that "you're not getting any younger and you don't get it for free", I was speechless and wish I would have told him I wasn't aware of what he thought was old and that I hadn't got anything free helathwise since age 18! My hubby would have liked to have crawled across his desk and strangled him. Still it took til May of 2006 for him to finally book me into his sjs clinic and  to diagnose the sjs. Funny fellow he is, I left his "care" after that. Found a new rheumy in Kingston who is wonderful. Sandra

Billydude

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #43 on: August 17, 2008, 09:01:45 PM »
Thanks Sue.   Just trying to be honest.
Steve

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #44 on: August 18, 2008, 01:37:54 AM »
Sue (sjenny)
Just wondering if you got a reply to the (1) email sent to R&D
Cheers