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Reply | Forward Message #302 of 634 |
Re: Updates

I'm looking at the link you provided below, and I noticed something important to realize....

Quoting the link: 

3. What must be accomplished before clinical trials can begin?
The immunomodulation treatment that was effective in the animal model for type 1 diabetes can be safely adapted for use in humans. However, the TNF-alpha needed for treatment is not available in the United States at this time. Production is costly, and support is needed to pay for its manufacture. An adequate supply of this is neeeded for the preclinical and clinical trials
.... (there's more, but I didn't copy it all.)

Obviously, this was a while ago, and a lot has changed with the research.  The trials will be using BCG to increase naturally occurring TNF alpha in the body as opposed to trying to manufacture and administer TNF alpha directly.  I'm sure just this change alone added time to the process of getting the trials underway.  This is a good change because it's an inexpensive drug as opposed to trying to use something that would be cost prohibitive, and may not have ever made it to a trial phase. 

Also, don't forget the automated blood assay that has been challenging and time consuming thus far.   From the latest update from the lab, the assay is moving along well, and they are anticipating starting phase one in early 2008.   They've been saying that timeframe for a while now, so I'm personally optimistic that this really will happen soon.

Another thing the link you posted says:

4. When will clinical trials begin?
If all the preliminary work goes smoothly, clinical trials may begin in 2003 or possibly earlier.

When you posted your quote, you left off the, "if all the preliminary work goes smoothly" part.  The assay has been time consuming, like I said.  It's a very important piece.  Funding has arrived slowly in the lab, and they haven't been fully funded yet.  As they meet milestones, they are receiving funding from Iacocca Foundation.  Other sources of funding send money to her directly through Mass General's Cure Diabetes Now fund.  All this takes TIME.

If anyone wants this research to commence, it's ME.  I have a 5 year old daughter that's had this since she was 20 months old.  She gets 6 shots most days.  She hates diabetes, and tells me regularly.  It breaks my heart when she's sitting before me, hands shaking, crying because she's ravenous due to being low, and I've already treated her, and she has to wait.  Or when she's really high, and can't run anymore on the soccer field, so she lies on my lap on the sideline.  I had gestational diabetes and had to take insulin with both my pregnancies, so I personally know what it feels like to be high and low.  I personally understand what the symptoms feel like, and I die a little inside every time I witness my little girl suffering.  She just started kindergarten this year, and preparation for school has been lengthy, time consuming, and difficult.  I'm on the phone every single day.  After care won't give glucagon, so we can't feel safe leaving her there, thus creating a hardship for us.  To see a picture of her when she was 3 years old with Dr. Faustman, go to www.bravedave.org , and read her story. 

In a nutshell - this whole life with diabetes sucks.  I get that.  Anyone interested in reading this yahoo group GETS THAT.  We all really GET IT.  We want the cure now too.  You're not alone in your sentiment.

However, don't rush the most promising research out there to trials before they are absolutely ready just because life with diabetes sucks.  Turn that anger/sadness/desperation, etc. into something more constructive, like spreading the word about it.  Ask Dr. Faustman or one of her representatives to explain what they are doing.  GO TO HER LAB, like so many of us have, and SEE FOR YOURSELF.  I can tell you, you would be uplifted to see and hear what's happening there. 

I'd rather wait a little longer, and the cure be much closer, than to rush to the trials, and fail.   I remember reading a post that Sue Root wrote reminding everyone that even with phase 1, we're not going to see cures yet.  We should see lots of positive data that tells them how to run phase 2, which I'm hoping is where we'll see dramatic results that will help our loved ones see an end.  I hope I don't see posts that say, "why aren't the first 40 people being cured???"  That's NOT what is expected.  We all need to remember that. 

What I always say to folks that help me fundraise.... let's make it so one day my little girl, and all those suffering with this disease can say, "I used to have diabetes."

Hopeful for a cure,
Stacy Lavery
Team Maryland State Captain, JLN Campaign
Nathan/Faustman Trials Yahoo Group Moderator




--- In nathanfaustmantrials@yahoogroups.com, "rn_hyatt" <rn_hyatt@...> wrote:
>
> Well, here I am again asking for any and all updates from the Faustman
> lab. I can't believe what started out in 2001 has yet to see the
> clinic. Will this work be forever pushed into the future?
> For a clinical trial that was slated to begin in 2003, the outlook is
> pretty bleak.
> I have included a link to the old MGH website that states "clinical
> trials will begin in 2003 or possibly sooner"! Of course that didn't
> happen. I also have a email from Marc Davino stating trials would
> happen in 2006!
> After 17 years with this monster, I am beginning to feel like I am
> waiting for something that will never come.
>
> http://web.archive.org/web/20040120204516/www.massgeneral.org/newsstori
> es/db_questions.htm
>


Sat Oct 6, 2007 9:22 pm

stacy_lavery
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Forward
Message #302 of 634 |
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I think it would be very helpful if we had monthly updates from the Drs. to keep us abreast of what is happening. I understand that they cannot take time from...
Patsy Van Huyck
PatsyVanHuyck
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Jan 20, 2006
7:30 pm

Hi Patsy and the rest of the Yahoo group, I agree that regular updates are helpful. Dr. Faustman is providing quarterly newsletters; the next one is due out...
Marc Davino
joinleenowmo...
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Jan 30, 2006
8:24 pm

There hasn't been a lot of activity on this board lately? Any updates to report? Anything?...
rn_hyatt
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May 23, 2007
11:11 am

... I am wondering the same thing?...
k2turner
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May 23, 2007
10:12 pm

I was sent a email from Marc Davino from Join Lee Now saying trials would begin in 2006, that obiously did not happen. So, I'm curious where are all the $$$$...
rn_hyatt
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May 24, 2007
11:11 am

All of the Join Lee Now state captains received a letter last week from Marc Davino. He had been busy with the Iacocca Celebrity Golf Tournament, which raised...
deanne kacmar
jaysonjaclyn
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May 24, 2007
11:16 pm

Are you sure the letter read $8.5 million was already given? I was under the impression that out of the $10 million pledged by The Iacocca Foundation to the...
Sue root
susan_root
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May 25, 2007
7:27 pm

Hi Sue, Well , I was reading it right from the letter as I was typing the e-mail, unless I misunderstood something. I was trying to copy it exactly. What do...
deanne kacmar
jaysonjaclyn
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May 25, 2007
10:02 pm

Hi Deanne, I did not get a copy of the letter as I'm no longer a JLN State Captain. I imagine that the $8.5 million total in the letter may mean to include all...
Sue root
susan_root
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May 26, 2007
8:53 am

Good morning all, I hope this finds you well and looking forward to summer. Just so we're on the same page, here is the paragraph from the letter to the...
Marc Davino
joinleenowmo...
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May 29, 2007
10:21 pm

Well, here I am again asking for any and all updates from the Faustman lab. I can't believe what started out in 2001 has yet to see the clinic. Will this...
rn_hyatt
Offline Send Email
Oct 6, 2007
7:58 pm

I'm looking at the link you provided below, and I noticed something important to realize.... Quoting the link: 3. What must be accomplished before clinical...
stacy_lavery
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Oct 6, 2007
9:22 pm

Hey -- I understand 17 years is a very long time to surrender your glucose control to a little meter and a revolving door of insulins --- and frustrating, to...
allieb2@...
allison_beatty
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Oct 6, 2007
8:44 pm

Any updates from the Faustman lab? Can anyone answer Joshua's questions?...
rn_hyatt
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May 17, 2008
2:37 pm

This has already been addressed by Dr Faustman. She was asked for blogs or updates by Bernard Ferrell, and as you read it in paragraph 13 is why there are not...
deanne kacmar
deannekacmar
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May 17, 2008
11:56 pm

Deanne, thanks for the information. I did not know that Bernard's blog was the place to go for information on Dr. Faustman's trial. Can you answer Joshua's...
rn_hyatt
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May 24, 2008
1:47 pm

My blog is NOT the official place to go. Use the Faustman Lab web site for that. However I did meet with Dr. Faustman yesterday. I've posted some details from...
Bernard Farrell
bernfarr
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May 24, 2008
2:30 pm

Hi Bernard, Yes, I know that your blog is not the official site, but I have to say that you are awesome, and the info you share is wonderful. Although I am...
deanne kacmar
deannekacmar
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May 24, 2008
2:58 pm

I don't know what Joshua's question is, I have tried to look for it in the messages in this group, but can't seem to locate it. Can you re-state the question,...
deanne kacmar
deannekacmar
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May 24, 2008
2:58 pm

Just to clarify a few things: Dr. Faustman submitted a Letter of Intent - a written request asking permission to submit a large grant to the foundation (in...
Sue root
susan_root
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May 25, 2008
10:50 pm
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