Author Topic: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding ?!  (Read 30207 times)

JannaLee

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #15 on: August 09, 2008, 02:47:51 PM »
The letter is perfect.  Don't change a thing.

Wouldn't it be cool if they took up this research!?

Janna

Sjenny

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #16 on: August 09, 2008, 03:07:54 PM »
Thanks Janna!

The Sjogren's Foundation offers grants only to US researchers.  I looked up the patent for this vaccine and it is being sought by two Canadians - Hans-michael Dosch and Shawn Winer from Toronto Canada.

I'm really confused, why are Canadians applying for US patents?  Do they need to get US researchers involved to get the Sjogren's Foundation grant?  Also, if the US was involved they could apply for an NIH (National Institue of Health )grant.  http://www.nih.gov/

I just saw Dr. Gene Watson from Rochester's Strong Memorial Hospital on Friday.  He keeps a database of 50 Sjogren's patients used for clinical trials - he was one of the original researchers on Pilocarpine.  He indicated to me that the NIH has been granted a lot of funding to research autoimmune diseases recently.

Kindandcaring - who could we contact to suggest these avenues of funding from the US and get this project off the shelf?

Sue

Linda196

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #17 on: August 09, 2008, 05:15:00 PM »
Sue, the reason that Drs Dosch and Winer are applying for US patents is that, if they don't, their work can be taken and used by any research facility without giving credit, unless the resulting discovery causes problems, in which case, if they haven't patented their work to the level they have achieved, they can be held responsible for any adverse results.

For example, the first patent for Insulin, the application of which was discovered by Dr Frederick Banting in Ontario Canada in 1920, was issued to an employee of Eli Lilly Company, a US firm, in 1922, although Banting was blamed for early failures due to reactions to the unrefined nature of early insulin. It was only after the patent was sold to the University of Toronto ( for $1) that the research facility was able to "roll over" any profit into further research, and Eli Lilly Co was invaluable in their continued research in purification and mass production. With all that financial business surrounding the work in the 1920's; Nicolae Paulescu, a professor of physiology at the University of Medicine and Pharmacy in Bucharest, was forgotten as the first one to isolate insulin during WW1.

Although scientific discoveries made by employees of a university or research facility in Canada do not provide any direct financial reward to the persons responsible, the facility by which they are employed can claim any financial gain, and use it to fund further research...something that we know is desperately needed.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #18 on: August 09, 2008, 10:24:58 PM »
Guys ..and especially Sue

Well ..because of the time differential and other commitments Ive missed posting this till today...Ive contacted the 'Sjogren's Syndrome Foundation' and they are now looking into it...Steve Taylor (CEO) is going to try contacting the Researchers..

He did tell me that they tried before on occasions and for some reason did not get a response...however he is going to do his bestest to find out whats going on...if the Vaccine is worthy the Foundation may be able to offer funding..so that's good news..

I provided him with a copy of the patent which he was thankful for, he had not seen the information contained within the patent before.

He also told me the 'Sjogrens Foundation' are funding (through member donations) the Faustman Research...which is the other BIG Hope for us all at the moment.

'Steve was reassuring as he stated the 'Sjogren's Syndrome Foundation' will leave no stone unturned in finding answers for us all.

Thanks to Steve and the Sjogrens Foundation for taking this onboard. !!  ;) :)

Perhaps we have gone as far as we can with this at the moment..we can but wait and hope that any news on the matter is positive.







« Last Edit: August 09, 2008, 11:09:13 PM by kindandcaring »

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #19 on: August 09, 2008, 10:43:18 PM »
Linda

Great points you made about why patents are kept going

lets hope their main interest in keeping the patent going is because they want to keep the credit..or any financial benefits

Sjenny

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #20 on: August 10, 2008, 07:52:03 AM »
Linda:

I guess my confusion arises because I assumed Canadians applied for Canadian patents and Americans for US patents etc. but I am woefully ignorant of the patent system, obviously.

Great news and good work Kindandcaring!

I am very thankful to the Sjogren's Foundation.   

If these researchers need NIH funding - maybe we could organize and write letters and lobby politicians.  It is in the best interest of the government to find a way to heal us - decreases publicly funded medical expenses and returns us to the workforce as productive taxpayers, by golly.

You would not believe how much I had to rattle cages and shake bushes to get my autistic son the services he needed, in addition to working long hours with him myself, but I grew a backbone and I did it - and as a result, he can talk, unlike close to 50% of the autistic population.

My favorite bible parable is the Parable of the Unjust Judge:

Quote
"In a certain city there was a judge, who neither feared God, nor had respect for people. In that city there was a widow who kept coming to him and saying, 'Grant me justice against my opponent.' For a while he refused; but later he said to himself, 'Though I have no fear of God and no respect for anyone, yet because this widow keeps bothering me, I will grant her justice, so that she may not wear me out by continually coming.' "  (Luke 18:2-5)


If we persist we can make good things happen!

Sue


nisha

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #21 on: August 10, 2008, 05:55:43 PM »
I am quite involved with the Sjögren’s Foundation.  They have accomplished a lot on our behalf.  I will also follow up on this since I know them.

nisha

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #22 on: August 11, 2008, 04:04:01 AM »
Sue

I love your life attitude !!

Great excerpt from 'Luke'

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #23 on: August 11, 2008, 04:17:14 AM »
nisha

Yeah I had not realised until I started researching this topic that the 'Sjogrens Syndrome Foundation' Funded Research....its reassuring to know that there is a real "force" working for us to find answers...an organisation like this is a great way to donate financially or raise money for.. knowing then that the money goes directly towards finding the answers for the 'Sjogren's Disease' we and our family needs so much !!

Just in case anyone reading this post/thread is unaware about the Foundation here is a link.....I don't know where Ive been...how did I miss it before LOL...

http://www.sjogrens.org/

Together with Sjogrens World..we are blessed to have two organisations that help us...we must support them as much as they help us... this will enable us to help ourselves !
« Last Edit: August 11, 2008, 04:20:58 AM by kindandcaring »

nisha

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #24 on: August 11, 2008, 08:30:58 AM »
Sue –

The SSF has funded research for a long time, but since Steve has been there, more effort has gone into it.  Each year the amount of funds dedicated to research (as opposed to education and the general fund) has increased. 

The Foundation is working hard to educate not only patients, their families and the public, but also the medical profession.  I am doing my bit on this,  and am amazed at the ignorance out there! 

The Foundation is still working with a small budget (as opposed to better known diseases), but apart from funding small projects, the hope is to provide “bridge funding” i.e. funding for a small project that then gets picked up by someone like NIH.

As mentioned in another post, if a celebrity had Sjs, it would become a household word.  Until then, it is not “sexy” enough, so it is up to us to spread the word and help fund the research.

Thanks again for sending your letter.

nisha


jjj3

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #25 on: August 12, 2008, 12:22:15 PM »
You should all pat yourselves on the backs - congratulations for making a difference!  We are all thankful for your efforts.  Please continue your good work and PLEASE, PLEASE continue to post here any news that can give us hope.  I really enjoyed reading this thread and look forward to reading what happens as a result of your efforts.  Perhaps this flurry of activity will lead to something big (we can hope - right?).  THANK YOU, THANK YOU, THANK YOU!

Cathy

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #26 on: August 16, 2008, 12:11:00 AM »
Sue, Nisha..anyone heard anything ?.any news...yeah Im impatient... :)
I will try contacting Steve next week other wise.

Cathy, hi, thanks for your thanks !

Thoughts for the future,
We all need to contribute what we can...IMHO...none of us are on top of our game..so all the sick can only share a little..and if we all do that..it will account for a big move forward in finding answers for this disease..whether it be each of us making small donations or helping to make this disease more important to the media and the health system. (like Steve AKA BillyDude)...I encourage anyone who wants to feel better to actually do one of those two things...

If we all donate a little of what we can...
If we all raise awareness of this disease ...if it be either by posting a Youtube Personal Account of this disease..or writing a letter to your newspaper...lobbying your workmates/friends and family...every bit from all of us will help get us all where we want to be...feeling better about ourselves our futures and our childrens futures.

One things for sure..we cant rely on anyone doing any of this for us !

Sorry for the passion..! I dont want it to come over that Im pushing or being aggressive..however I would agree that I really believe we must all act as much as we can...when we can..

All me best
« Last Edit: August 16, 2008, 12:12:35 AM by kindandcaring »

kindandcaring

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #27 on: August 16, 2008, 12:26:06 AM »
I didnt mention.... rather than just preach...I will be making a Youtube Video...I want to get important message out that
A) People who have this darn diseases are not alone...
B)that there more people than you think are sick with these AI's (including men)
C) Also that you might look OK but you are NOT...!! Give me a couple of weeks to get things together before it occurs.....

Now no more off topic talk..this thread is most importantly about the Sjogrens Vaccine

Billydude

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #28 on: August 16, 2008, 05:24:56 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

Sjenny

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Re: A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding
« Reply #29 on: August 16, 2008, 08:08:59 AM »
Kindandcaring:

I haven't heard anything yet - I'm impatient too.  We've all suffered long enough in my humble opinion.

I'm composing a letter to Faustman labs - I'll offer them my help and maybe my body (which is not worth much these days)!

Sue