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

[kindandcaring]

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

Hi Cathy
Hope your symptoms are leveling out today !

I think I can answer your query re Faustmans Vaccine Trial....the trial is for Diabetes...correct..the reason is perhaps alo of the funding was provided with Diabetes in mind...(laccoca foundation) and probably reasons of numbers..meaning the numbers of people with Diabetes is probably greater than SJogrens (however Id like to see the figures side by side) so they decided to aim it Diabetes first.

In actual fact the Faustman Vaccine was first used to fix up Sjogrens first !...then Diabetes in mice...so it is a very promising Vaccine if shown to work in humans.
Now the question is will they be able to use it on Sjogrens patients if it passes the Clinical Trials for use with Diabetes....well I dont know...anyone care to say the answer?  I think its going to be a no..but I dont want to think that !

Perhaps if it works for Diabetes they would have to go thru yet another (albeit shorter) trial for Sjogrens Patients...to get FDA approval.

Steve mentioned they are putting funding towards the Faustman Research that is all I know.

if I hear anything more Cathy...be very aware..I WILL post it as fast as it as I can type..hoping still it could be a positive reply..but we will have to wait..sounds like Steve is busy..perhaps in negotiations...lets hope so.

[jjj3]

Thank you kindandcaring.  The SSF has given a grant to Denise Faustman for "Examination of human spleens for a Hox11 expressing stem cell involved in salivary epithelial regeneration".  See http://www.sjogrens.org/research/research.html

I'm wondering if this is something that will (or is) become a human trial that can be running concurrently with the Diabetes trial, thus perhaps we won't have to wait as long.  I don't fully understand how the SSF research works.  Can any of it be in human trials?  I'm assuming not, but hoping it is.  Do you know if drug trials publish any results after each phase or just after the end?  Obviously, if they move from one phase to the next, there has been some success, but I'm hoping Faustman puts some info in her newsletter.  Sorry for so many questions.  You all are so much more knowledgeable about this process than I am.

Sandra - Sorry about your experience!  That's terrible.  Some doctors have no bedside manner.  I hope you found someone who is much nicer.

Thanks everyone for your sharing your knowledge.  I'm so very grateful.

Cathy

[Sjenny]

Cathy:

The drug Dr. Vivino is testing is called NGX267 oral capsule.  See http://www.clinicaltrials.gov/ct2/show/NCT00637793?term=sjogrens&rank=14

Dr. Watson wants me to participate in clinical trials to use a "spit test" for Sjogrens versus the standard lip biopsy.  They are trying to identify "marker proteins" in spit that would make lip biopsies unnecessary for diagnosis.  I'm all for that!

Kindandcaring:

So far, I've gotten no reply to my email.   But from what Nisha says, the Sjogren's Foundation is looking into it.  I think what distresses me is that the researchers themselves did not respond to contacts from the Sjogren's Foundation earlier.  If someone was offering me the prospect of some money, I would surely be in contact with them.  Have the researchers lost interest or time or what's going on with the research itself?

Sandra:

I'm avoiding Dr. Bookman at all costs!  "I'd like to tell you, you have lupus . . ." - What in the world is wrong with that man!???!  Thankfully he's not a psychiatrist, I predict all his patients would be jumping off bridges.

Best Regards,
Sue

[nisha]

Cathy –

To clarify for you - the SSF solicits applications for research grants that are awarded annually.  So what type of research is funded depends largely on what applications are received.  However, the grants are not large (the SSF runs on a pretty tight budget).  In 2007 the total grants awarded totaled $196,000, and this year it should be around $250,000.  The SSF tries to provide the "seed" money to hopefully jump start larger studies funded by the likes of the NIH.

nisha

[kindandcaring]

Cathy:

The drug Dr. Vivino is testing is called NGX267 oral capsule.  See http://www.clinicaltrials.gov/ct2/show/NCT00637793?term=sjogrens&rank=14

Dr. Watson wants me to participate in clinical trials to use a "spit test" for Sjogrens versus the standard lip biopsy.  They are trying to identify "marker proteins" in spit that would make lip biopsies unnecessary for diagnosis.  I'm all for that!

Kindandcaring:

So far, I've gotten no reply to my email.   But from what Nisha says, the Sjogren's Foundation is looking into it.  I think what distresses me is that the researchers themselves did not respond to contacts from the Sjogren's Foundation earlier.  If someone was offering me the prospect of some money, I would surely be in contact with them.  Have the researchers lost interest or time or what's going on with the research itself?

Sandra:

I'm avoiding Dr. Bookman at all costs!  "I'd like to tell you, you have lupus . . ." - What in the world is wrong with that man!???!  Thankfully he's not a psychiatrist, I predict all his patients would be jumping off bridges.

Best Regards,
Sue

Hi Sue

Wow you are helping us all by participating in that trial...and that spit test sounds  like it could be a real step forward in diagnosis...I know a few have lost the ability to feel their lip properly after the Lip biop...so great news at least someone is trying to move forward.

I noticed the trial your on is asking for more recruits...it would be a a backward step if they cannot run the trials because of lack of numbers......if I was closer on this planet I d be there!..not one trial can I find for Sjogrens In Australia...

Please keep us informed on how you go..

The Vaccine and researchers..I think we have to wait and see what Steve finds out first...
If its only money and they want it..I would start collecting tomorrow..!

[kindandcaring]

Cathy –

To clarify for you - the SSF solicits applications for research grants that are awarded annually.  So what type of research is funded depends largely on what applications are received.  However, the grants are not large (the SSF runs on a pretty tight budget).  In 2007 the total grants awarded totaled $196,000, and this year it should be around $250,000.  The SSF tries to provide the "seed" money to hopefully jump start larger studies funded by the likes of the NIH.

nisha

Nisha
es that budget is small..however as you say it may well be enough to get the ball rolling...if this Vaccine requires only money then Im sure we all would rally our resources...and keep going until a figure was reached.

[nisha]

As promised, I followed up with Steve at the Sjögren's Syndrome Foundation about the Canadian research that started this thread.  I also told him I would post a response here.

The SSF has tried on numerous occasions to get a response from these researchers.  Nobody has ever replied.   The latest attempt has met with the same result. 

That raises a real red flag for us – researchers are always avidly looking for funding, so something is strange about this.  The other thing that is odd about this is that the exact cause of sjs is unknown. So how does one develop a vaccine to prevent it?

When contacting the researchers in the past, the SSF even offered to make an exception to its general policy of funding only US research.  Even that did not solicit an answer. 

My own opinion is that the patent was applied for (in 2002) and then renewed because the researchers hope that at some future date they might actually conduct some research.  But that is just my thought.

Anyway, the SSF has really already done all it can. 

As a reminder, all donations to the SSF that are designated for research go directly towards the research grants that the SSF awards each year.  So please consider the SSF in your giving plans.

nisha

[irish]

nisha, That is very interesting about that research group. Makes you wonder if they are getting money and using for personal means.?

I have met Steve Taylor and spoken to him on the phone back when I was a moderator. His mom has Sjogrens and he is dedicated to finding a cause for the disease. I think he does everything he can. I do know that the amount of information out there and in the Moisture Seeker has increased greatly since he became CEO. The seminars are good also. If anyone has one in their area or even within 100 miles or so---even if you need to take a mini vacation with hubby overnight it is worth going. Have hubby go also. The seminar I was at had quite a few relatives trying to find out how to help their parents/siblings cope with Sjogrens. Irish

[kindandcaring]

Thanks Nisha for letting us know what you have heard from Steve.

I have yet to hear from him, Im hoping he gets back to me as he had indicated as well with the news, nevertheless if not I will try to contact him one more time .

That's just weird those researchers...we can but speculate WHY they (researchers wont respond.)

The point about all this thread was the response that they have a funding issue ! Why say that and reject any approaches..Steve has the contact who told me this..perhaps there is more yet to come from asking that contact.

With the patent I provided Steve I was hoping that his clever contacts could make something of it.. they could perhaps ascertain  if the Researchers were really onto something..I guess no word on that score ?

Nisha Im not sure you could say that a Vaccine is unlikely to be valid because we do not know the cause of Sjogrens yet......you could say the same thing about the Faustman Vaccine..yet its now at the trials stage. the mechanisms that get us to the stage of autoimmunity are seemingly complex and interruption of any stage of the processes  to the path of Autoimmunity maybe enough to prevent the disease  occurring...at least thats how I see things at the moment.

I hope that Steve and his contacts keep trying to find out the real Why... it wouldnt sit right with Steve...knowing his family is involved it does not get anymore personally motivating than that !

Darn if only we knew someone who new someone to find out the truth...anybody got contacts in Canada ?!
Not one to let things go...

If I hear anything more to add i will.

Things are not always what they seem are they...its currently looking like we are back to hoping that the 'Faustman Vaccine' works at least for the time being !

Now if that Faustman Vaccine passes Phase 1 with flying colours...its worth backing all the way !!

As a reminder, all donations to the SSF that are designated for research go directly towards the research grants that the SSF awards each year.  So please consider the SSF in your giving plans.

Thanks for this reminder.. SSF is certainly a worthy Cause.. that will help us all DIRECTLY !!

As promised, I followed up with Steve at the Sjögren's Syndrome Foundation about the Canadian research that started this thread.  I also told him I would post a response here.

The SSF has tried on numerous occasions to get a response from these researchers.  Nobody has ever replied.   The latest attempt has met with the same result. 

That raises a real red flag for us – researchers are always avidly looking for funding, so something is strange about this.  The other thing that is odd about this is that the exact cause of sjs is unknown. So how does one develop a vaccine to prevent it?

When contacting the researchers in the past, the SSF even offered to make an exception to its general policy of funding only US research.  Even that did not solicit an answer. 

My own opinion is that the patent was applied for (in 2002) and then renewed because the researchers hope that at some future date they might actually conduct some research.  But that is just my thought.

Anyway, the SSF has really already done all it can. 

As a reminder, all donations to the SSF that are designated for research go directly towards the research grants that the SSF awards each year.  So please consider the SSF in your giving plans.

nisha

[Linda196]

I'm not sure how it could be possible, but they may have run into the same issues that somehow made it impossible for SSF to send my Moisture Seekers to me in Canada, or to reply to me when I e-mailed or snail mailed them...I had to make more than a dozen long distance phone calls to the main office before I was finally able to talk with someone (many calls met with a recorded response stating that the nubmer dialled was innaccessable from my location), and it took almost a year after that to start receiving the magazine. They insisted that they had sent the magazines, read the snail mail address back to me (it was correct), told me they had replied to my e-mails and 2 snail mails, and even called me (so I know they were getting my communications), none of which I received, and no unknown or international numbers showed up on my phone. To further confuse the issue, my initial cheque for membership was never cashed (so why would they have been trying to send the magazines?), and after 4 months I put a stop payment on it...according to my bank, there was never an attempt made to cash it.

I even went so far as to contact a friend in the Canadian Immigration and Customs office to see if there was any way the magazines could have been held up (which wouldn't explain the e-mails, letters or phone calls) and she gave me the list of what could legally be held, nothing remotely resembling Moisture Seekers was there. She called me a week later to tell me she checked further and couldn't find any thing for me. I don't know if anyone else in Canada had issues, but I was starting to get the same feeling that I have gotten in the past about "cross-border communication", that it wasn't worth the effort.

It wasn't until after I mentioned my involvement with Sjogren's world, and named a few names from here (in the context of having heard from them about articles of interest to me), that my magazine finally started and has continued since. It does, however, arrive 1-2 months late. For example the issue I received Monday of this week is dated May 2008, and I know I've read comments from some members about the article on sun exposure in the latest issue...may latest issue discusses medical fakes and frauds. I do get other periodicals from the US, and they are usually delivered before the next issue is on the stands. Most personal mail I receive from the US is delivered in 3-5 days, just like mail originating within Canada. I find the whole situation confusing, but since I'm getting my mag, and I can and do make donations directly to the University Health Network tagged for this or similar research(researchers here don't receive donations personally), I'm not complaining.

[kindandcaring]

Hi Linda

Yeah you are highlighting a problem perhaps with border communications..curiouser.

Certainly if 'comms' is a problem having someone in Canada could be key...not sure if SSF has connectons in Canada or not.

[Sjenny]

Kindandcaring:

This is all very puzzling.  If the research was not promising - why would they bother to patent it?  And if the research is promising - why would they not welcome funding? 

Could you email your original contact at the sick kid's foundation and tell them you have discovered a source of funding and see what their response might be?

As I sit here in my frustration, I am sorely tempted to drive to the University of Toronto and park myself in Dr. Dosch's office to inquire about his Sjogren's research.

Road trip, anyone?

Sue

[nisha]

 Linda –
How very strange that you have had such weird problems receiving things from the SSF.  No doubt kindandcaring is right that it is a border communication problem, but it is still weird.  This is bugging me – I don't like things I can't understand (one of my many character flaws)!

Kindandcaring –
I am not sure that you will hear more from Steve at the SSF.   I think he feels that they are just spinning their wheels on this one because nothing they have tried has ever resulted in a response. 

As Irish mentioned, Steve's mother has Sjögren's,  so you know he will leave no stone unturned to explore a lead.   This one just failed to deliver.

nisha

[nisha]

kindandcaring -

Are you in Australia?  Just curious.

nisha

[kindandcaring]

Kindandcaring:

This is all very puzzling.  If the research was not promising - why would they bother to patent it?  And if the research is promising - why would they not welcome funding? 

Could you email your original contact at the sick kid's foundation and tell them you have discovered a source of funding and see what their response might be?

As I sit here in my frustration, I am sorely tempted to drive to the University of Toronto and park myself in Dr. Dosch's office to inquire about his Sjogren's research.

Road trip, anyone?

Sue

Sue

Yeah If I were on that side of the planet...id work in a plan to pass by.. drop in and see I could not find out !  ..there is no harm in trying to get to the truth...the truth is to be found

The problem at the moment is ..we Still don't really know what is going on..

I did the Funding offer straight away to the contact (weeks ago)..unfortunately Zero response thus far..I dont know why it is so hard to communicate at the moment with these guys..Linda's experience makes you think.
Nisha has relayed that Steve has had no joy yet again..

yet at the moment we are not aware of the circumstances.. meaning was there a response to say they dont want funding or if they just never responded......

If they never responded then just perhaps the communication is breaking down before it gets to the Researchers.

Its all speculation...and if we dont hear any more....the confusion will remain indefinitely.

I guess one needs a well connected contact either in Canada or who is going to Canada to have more of a chance of finding out....however if one was innocently passing by the Lab..then whats the harm in trying !


Nisha
Yeah though I do hope Steve does reply to me as he said he would.
Perhaps you could find out if he got to talking to the Researchers ..or if the communication was other than verbal and one way only (no response)...if you see what Im gettin at

Yeah I can tell Steve is well motivated just the same as  we are..and as such Im sure he would not mind sharing the circumstances of the communication, so that we could understand a little better.