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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Wed Sep 28th, 2005 03:09 |
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From http://nihroadmap.nih.gov/pioneer/symposium2005/
see AGENDA
Thursday 29th, 2005. 8.15am - 3pm
NIH Director's
Pioneer Award Symposium
Masur Auditorium
Clinical Center (Building 10)
NIH
Bethesda, Maryland.
& To view a Web broadcast of the symposium, go to http://videocast.nih.gov.
JRFoutin wrote: "RealPlayer is required for the NIH webcast. Those with just the windows media player will miss out on details if they haven't got it installed before the event.
I just loaded my machine with Realplayer. They don't need the expensive one, just the standard freebee."
World Clock
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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shegeek
Member in Phase 3
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Posted: Wed Sep 28th, 2005 05:23 |
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The best of luck to you, Dr. Marshall.
I'll be offline, changing residence, but my thoughts will be with you.
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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 29th, 2005 10:26 |
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We had a good meeting Wednesday morning with Dr Steve Groft, Director of the Office of Rare Diseases.
Then we 'tested' the subway ride and 'cased' the Masur Auditorium. Here are Meg and Belinda in front of the NIH Director's Message Board in the Clinical Center
There probably won't be a lot happenning on the webcast, as we are going to keep a low profile. The banners will not be obstructing the camera, and all the discussions will be face-to-face at the various breaks during the sessions.
There is a Press Release with some big news that we will be giving to the press next Monday. You can have a look at the news yourselves, and later in the day I will be back online so we can talk about how to make sure we get as wide a coverage as possible for it.
http://autoimmunityresearch.org/press_3oct05.pdf
..Trevor..
Last edited on Fri Sep 30th, 2005 11:37 by Dr Trevor Marshall
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Ramzi70
Member in Phase 3
| Joined: | Mon Jul 19th, 2004 |
| Location: | Beirut, Lebanon |
| Posts: | 28 |
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Posted: Thu Sep 29th, 2005 11:45 |
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| Good Luck to you all.
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1995 FMS; 2002 reshearch sarcoidosis found out same Symptoms;
Jul 19th, 2004 phase2; Jan 14th, 2005 phase3
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Freddie Ash
Member in Phase 3
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Posted: Thu Sep 29th, 2005 14:17 |
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HI ALL
This is Fred in WV. Thanks to all and I have been praying that this will be the final fight with the NIH to get this cure out to all the people that need. This is big!!!
Your friend in sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Frans
Member in Phase 2
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Posted: Thu Sep 29th, 2005 14:52 |
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Wow !
This looks promising! Especially the cooperation with eg the people of the OOPD looks very promising to get things accepted!
Now I understand what you have been doing with your time 
I can't help it, but a phrase from a movie with Tom Cruise and Cuba Gooding jr keeps coming to mind:
"SHOW ME THE MONEY !!!"
Sincerely, a very hopeful Frans
PS I just heard of another doctor here in the Netherlands who is probably going to implement the MP... to be continued...
Last edited on Thu Sep 29th, 2005 14:53 by Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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kikdoc
Member
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Posted: Thu Sep 29th, 2005 14:54 |
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| This is GREAT news, Dr. Marshall! Congratulations on all of your hard work and perseverance. I look forward to hearing how the Trans-NIH meeting went!
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FM,IBS,MVP,RLS,tachycardia,arrhythmia,unrelenting insomnia;Tick bite 05/96,Lyme+ 6/05;Phase 1 MP 6/30/05; Vit D 1,25:77; Benicar 20mg q8hr; mino 100mg q48h; quercetin q8hr; meds=benzos, dopamine, muscle relaxants, proton pump inhibitor, beta-blocker, and
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Frans
Member in Phase 2
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Posted: Thu Sep 29th, 2005 16:44 |
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Dr Marshall,
Can you tell us what exactly will be the results if these applications are awarded?
1. will there be money made available to do the phase III study?
2. same question, but for formalising the phase I and II studies by gathering the results from those phases?
3. will beni/clindy/mino be officially made applicable for sarc, leading eg to an obligation for insurance companies to pay for these drugs, when used for sarc?
4. will this finally put an end to dr Cheney's objections about the type II receptor being wide open for angotensin II to bind to...?
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Betsy G
Member in Phase 3
| Joined: | Fri Oct 8th, 2004 |
| Location: | Meridian, Idaho USA |
| Posts: | 425 |
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Posted: Thu Sep 29th, 2005 16:49 |
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NIH webcast cancelled?? Now, why would that be??? Anxious to hear how this day progresses. Good luck to you Trevor, Meg, and Belinda!!
Betsy G
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Sarcoidosis by lung biopsy, muscle joint skin 25D-10(Dec07). Nov04 Benicar. Ph1Mar05 Mino,NoIRs, K cream,windows covered. Ph2Jun05. Ph3July06. Wellbutrin Vit E
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LeAnne
Member in Phase 3
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Posted: Thu Sep 29th, 2005 17:26 |
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They went to lunch at 11:30 and will be back at 1:00. The schedule said they had an awards presentation. This was probably not broadcasted.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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wytnez
Moderator
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 653 |
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Posted: Thu Sep 29th, 2005 22:19 |
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I couldn't open it. Could someone give a short summary?
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Dr Trevor Marshall
Research Team
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Posted: Thu Sep 29th, 2005 22:48 |
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It has been a very busy day.We didin't see the awards as we spent several hours in a meeting hastily organized by Dr Zerhouni's Office staff with key folks from NHLBI who have been standing in our way. There were 8 of us in the meeting and this overwhelmed the naysaying of the NHLBI Luddites IMO.
This was a very important day, the day NHLBI was finally brought to the table, and I will post details later on, after we have all debriefed and calmed down.
Belinda has a photo of herself with Dr Zerhouni which I haven't been able to copy out of her camera yet  Here is a group photo of the MP delegation on the steps of Building 1, Dr.Zerhouni's ofice, after the meeting.
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Frans
Member in Phase 2
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Posted: Thu Sep 29th, 2005 23:07 |
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Wow!
An unplanned meeting instigated by dr Zerhouni's staff ??
That sounds like a miracle !
We couldn't have hoped for more, I think?
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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LeAnne
Member in Phase 3
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Posted: Fri Sep 30th, 2005 00:12 |
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I am soooo proud of all of you that participated in this meeting. Thank you for representing us! I truly hope we have made progress in getting the NIH to listen. Keep us posted on other upcoming conferences. I think if we could get fifty or more patients on the MP or recovering patients to one of these meetings, it would be wonderful!! I am wondering if there will be any future meetings designated only for the MP in which we can invite doctors and those that may have inquiring minds.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Robertrr
Member in Phase 3
| Joined: | Thu Jul 14th, 2005 |
| Location: | Austin, Texas USA |
| Posts: | 384 |
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Posted: Fri Sep 30th, 2005 03:43 |
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This really sounds like good news! Thank you for representing all of us MP'ers and helping to spread the good news that there is hope for all the people out there who are stuck with Doctors using conventional medical wisdom to treat these diseases!
Keep up the good work!
Robert
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Sarcoidosis 125D44 25D28 Ph1Jul05 Ph2Sep05 Ph3May06 D25-8(Feb07) May08 NoIRs outside otherwise normal light exposure
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Dr Trevor Marshall
Research Team
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Posted: Fri Sep 30th, 2005 03:53 |
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LeAnne,
We have requested that NIH host a "State of the Science" conference to examine exacty what we really know about Sarcoidosis.
..Trevor..
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
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Posted: Fri Sep 30th, 2005 04:19 |
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That is so fantastic. Absolutely fantastic. Anything previous to MP is simply outmoded science. But that is the gold hidden between the lines on this site, and in the hearts of those who stood for us this day.
Thank you all deeply, gratefully, thoughtfully, constantly. Thank you.Last edited on Fri Sep 30th, 2005 04:22 by jrfoutin
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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ShrnHml
Member in Phase 2/3
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Posted: Fri Sep 30th, 2005 05:47 |
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I couldn't open it either. I'm extremely curious, so can someone tell me what the good news is?
Thanks...............Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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LeAnne
Member in Phase 3
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Posted: Fri Sep 30th, 2005 12:01 |
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Dr. Marshall,
If your request is granted, than this would be the perfect opportunity for all MPr's to attend! Everyone of us who have been so graciously blessed by the findings of the MP, should try to make the effort to attend. Again, Thank you.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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wrotek
Member in Phase 3
| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1163 |
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Posted: Fri Sep 30th, 2005 14:09 |
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amazing 
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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