A Travesty !? - Promising Sjogren's Vaccine Shelved - Lack of Funding ?!

[Sjenny]

Dear Dr. Winer:

I am thrilled and excited that you found us and deeply appreciative of the research you conduct.

The Sjogren's Syndrome Foundation  { http://www.sjogrens.org/research/ } is trying to contact Dr. Dosch to offer possible funding but to no avail for some mysterious reason.  Would you contact Dr. Dosch about this funding possibility for us?

If more funds are needed, many of us are very willing and motivated to explore every possible avenue, write letters, contact political powers, shake bushes to get those grants approved and do whatever it takes for this very important research to go forward.

Best Regards,
Sue Jennings

[nisha]

Shawn –

THANK YOU for your very clear and understandable explanation.  And thank you too for settling my vaccine question!  I am particularly fascinated by your explanation because I am one of the very small percentage of Sjögren's patients with Sjögren's related Pancreatitis. 

I will be passing this information along to the SSF tomorrow. 

I am so glad you came along, and echo the others that it is great of you to take the time and effort to post.

nisha

[kindandcaring]

Nisha/Everyone,

This Vaccine..for us perhaps we should think of it as a Treatment which has Preventative Qualities..!?

Its been quiet for (only) a couple of days...!
Hoping the wheel is still turning with this someplace and favourably

[nisha]

I can't help feeling that if this research were so promising, it would have been funded.  Someting about this does not make sense and I'm beginning to think we will not find out why.  It seems others before us have tried to no avail.  This is so frustrating.  (If I had more saliva I would spit).

nisha

[kindandcaring]

Yeah the only spit I do these days ..is spitting the dummy   

Certainly a mystery...the answer is out there ..and I think we need to know period !

[irish]

nisha, I am not trying to be a wet blanket, but I agree with you. There is something here that doesn't meet the eye. Irish

[kindandcaring]

The way I see the questions we need the answers for...

Is it being denied funding because the Vaccine was not deemed likely to succeed ?
Or is it because its only for Sjogrens(not a big enuff disease) and thus not deemed worthy the investment ?
Or Other ?

Sounds like a poll 

[Sjenny]

I suspect Sjogren's is not a "big enough" disease to attract attention.  I never heard of it before I got it and neither have any of my friends or family.

I suspect researchers think the big money is in diabetes and don't know how many millions of us there are - 

Sue

[nisha]

Sorry, but I don't subscribe to the "sjogren's was not important enough" theory.  I did a bit more probing on my own, and they did not follow through on trying to obtain funding (and I'm not talking about the SSF here).

So I am back to thinking that something isn't adding up.

nisha

[kindandcaring]

Hi nisha

Please can you elaborate what you have found out (funding)..any light on this murky issue would be enlightening. TIA

[nisha]

Unfortunately what I learned was passed on to me in confidence, so I can't elaborate.  I knew as soon as I wrote that post that I probably should not have since I can't say more.  I'm not actually sure why not – maybe I can find out.

nisha

[kindandcaring]

Nisha

Thankyou for letting what you could out of the bag... 





Hope the 'source' has a change of heart and finally realises WE deserve to hear the truth...

The truth is out there...I know many are asking questions so perhaps we will find out in the near future.
Wouldnt it be nice to either cross this one of the list or put it back in...I mean this is all we care about...this information and more would help to understand if its worth more effort.

[nisha]

kindandcaring -

I will ask why I was asked not say anything, but it will be next week what with the long weekend (here) and Holiday Monday. 

nisha

[kindandcaring]

nisha

np

please dont stress ...if they dont want to ....they dont want to ...up to them...

Enjoy the Xtra day 

[kindandcaring]

anyone heard of...anything...anything at all about this ?

At the moment..I still do not know what to make of it all...despite co researcher/author of the Vaccine Dr Shawn Winer posting ..
Unfortunately it did not answer or explain the reason why the Vaccine has stalled (it hinted that a lack of funding) nor why offers of help/potential funding(from SJS)  are going begging....!

Linda was going to talk to an Ethics Board Contact...any news Linda  ?..TIA

Nisha was checking to see if she was allowed to say more about the funding history of this vaccine..any news Nisha ? TIA

And I think that's about  it for a recap and status question/update.
If anyone has found out more..please do post...