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ARF's 2006 Conference - LAX on 17/18 June
 Moderated by: Prof Trevor Marshall Page:  First Page Previous Page  1  2  3  4  5  6  7  8  9  10  ...  Next Page Last Page  
 

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Prof Trevor Marshall
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 Posted: Sun Apr 23rd, 2006 01:49

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There is a free shuttle that runs from the Hilton to the Manhattan Beach downtown business area, where there are lots of opportunities for exotic shopping
http://www.downtownmanhattanbeach.com/

You can also call the Bell Desk at the Hilton (in a few days, once you have registered) and ask specifically about the tour buses running that weekend (for example, "Los Angeles by Night" http://tinyurl.com/m7ers )

Reenie
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 Posted: Mon Apr 24th, 2006 21:12

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I've been in contact with my roommate for the conference as she tried to book the room and the hotel still can't find ARF.  I told her to ask under Dr Trevor Marshall and she said nothing was listed under that either.  

This may be a problem if people are booking their hotel rooms anyway.  I think this may need checking into.

Last edited on Mon Apr 24th, 2006 21:13 by Reenie

Prof Trevor Marshall
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 Posted: Mon Apr 24th, 2006 21:24

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I got the confirmation for the contract today, and the rooms will be set up in the computer tonight or tomorrow morning. Please email me if they are not available tomorrow:)

jrfoutin
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 Posted: Mon Apr 24th, 2006 21:54

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The nice young lady assured me the sales staff would have it by Monday but... I'll try again tomorrow.



____________________
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
DNStog
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 Posted: Tue Apr 25th, 2006 02:45

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Hilton's 800 number now has the ARF listed for conference bookings. I made my reservation at 5:50 a.m. this morning. :)

Donna



____________________
Sarcoidosis systemic; Raynaud's, uveitis, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Cinnamon, claritine, Milk Thistle, Rx glacier, 05/09 25D5, 125D7
Freddie Ash
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 Posted: Sat Apr 29th, 2006 09:22

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HI ALL

This is Fred in WV.  Sue and I are all set to be in LA on friday 16th at 3:36pm CA time. We hope to see some of you that might be there on friday evening.  There are so many that I want to meet face to face.

Remember, we are all in this together and I am pulling for us.

Your friend in sarcoidosis

Freddie



____________________
Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-25D-7; 125-D43
jrfoutin
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 Posted: Sat Apr 29th, 2006 09:50

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I have my airline tickets and just got my LAX Hilton room using the 800 number posted on the Conference link.

I did get some confusing information, though, that Friday the 16th only had 1 King bed rooms available at this time under the block ARF set up. I assured her that most of us were just getting our tickets and room reservations at this time and Friday was a must for those coming from the East (unless you are planning to fly out in the middle of the night to make it on time for the first Saturday session) but the attendant said if I wanted to get the rate posted on the ARF information page, that 1K bed rooms were all that was left.

Now I've bunked with my sister before in my life, and those coming in with spouses might appreciate the 1K rooms that are left for Friday. But it might be good to have ARF check out the situation and maybe get it straightened around so there is a better availability option.

Thanks!--JRFoutin

Last edited on Sat Apr 29th, 2006 09:51 by jrfoutin



____________________
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
Prof Trevor Marshall
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 Posted: Sat Apr 29th, 2006 13:07

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JR, I just spoke with the hotel folks. They will get the allocation problem fixed on Monday. Problem was they didn't allocate us enough rooms for Friday night. They will allocate more as soon as the reservations folk get back to work next Monday. Sorry about that. This hotel has a lot more buearocracy than the little one we stayed in at Chicago.

I was assured the hotel has lots of rooms that weekend. This is just a blip. Sorry about that.

..Trevor..

Michel
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 Posted: Mon May 1st, 2006 08:08

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Dear Trevor,

It's a bummer I won't be able to attend LAX conference in June.  I definitely want to know as much as possible about the progress of the MP, and how it can be contributing to other areas of research.

Will (some of the) sessions be recorded for posterity :) ? If so, please sign me up for a copy. Thank you very much.

Toodles,

 

Michel



____________________
sarc, diagn 1992, NoIR and Spectrashield glasses, latest test results from 9/15/06: ACE 49 IU/L.
MP Ben. since 9/03/05, 100 mg Mino q2d since 10/08/05. Phase II since 11/12/05, Phase III since 03/24/06.
LeAnne
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 Posted: Mon May 1st, 2006 12:53

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I was wondering if during the sessions with John McDonald, if we could get a volunteer patient, let's just say for sarcoidosis, to get a sample of their blood and have John McDonald show us "live" how to detect it. I know it can take up to several hours, but it would be interesting to have the total process on dvd. If he was to do the initial step early during the conference, maybe we could have the process on dvd. This is just a thought. Would it be possible to do at this conference? I know that this dvd will go out to many inquiring minds. What better way to prove our case than to actually video the process.;)

LeAnne

 



____________________
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
The_Seeker
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 Posted: Mon May 1st, 2006 13:58

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I have another idea for the conference though I don't know how feasible it might be.  Might it be possible to have the blood draws for the Vitamin D tests performed and the draws properly processed for lab analysis (by Quest perhaps) while at the conference?  The results could then be mailed to the patient-attendees home addresses. This might give those attendees not yet on the protocol a jump start when they approach physicians in their own areas when they return home.  I assume the conference organizers could recruit a licensed physician volunteer already a proponent of the protocol to oversee the process and write the necessary Rx. Thoughts?

The_Seeker 



____________________
MP Phase 3 as of 11/01/2008; posting for wife; sarc dx 02/2006; Ph 1 start - 2/23/07. Latest D25: < 4 (1/24/2008). NoIRS when out of home and when on PC. Sun exposure - ~ 1 hr q2wks. Usually in home behind heavy curtains and 15 watt lighting.
kmg
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 Posted: Mon May 8th, 2006 17:19

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I like this idea about blood testing at the conference. I am struggling with getting docs and blood labs to understand my desire in the testing/handling methods... and one just gave me a funny look of disregard. Perhaps I am not strong enough in communicating what I need... I need to revisit this... maybe I can find a doctor without a lab who will write me an order for a local Quest lab. At any rate, I would be up for this if it could be done at the conference.

By the way, I can make June 17/18 if you are still looking for head counts. I'll start booking the trip shortly. I'm waiting to find out from my husband as to whether he can join me or not.

Thanks,
Karen



____________________
Sarc lungs/skin. Started Phase I and then lost my nerve. Working on modifying my lifestyle so can successfully restart the MP. Don't know when, but when I begin, I want to make sure I'm ready 100% and that I don't back out.
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 Posted: Mon May 8th, 2006 21:56

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Karen,

We're happy to know that you will be joining us at the conference.

There won't be any testing of blood at the conference. The liability issue of performing an invasive procedure would stop us, not to mention the logistics of setting up a drawing laboratory in a hotel.

Best,

Meg

jrfoutin
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 Posted: Tue May 9th, 2006 09:55

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I'm not saying a blood draw at the conference is a good idea or not. I just personally think it would take too much space and too much time away from sessions like the one that helps patients understand how to work with their healthcare providers for this kind of thing, along with many other issues. (Even if ARF could figure out a similar kind of thing that the Red Cross does to take blood in multiple locations and arenas.)

Also, blood tests are not always the final word or a therapeutic probe wouldn't be so popular with MPers, or so useful in identifying where the disease has really landed in any one body.



____________________
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
Prof Trevor Marshall
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 Posted: Tue May 9th, 2006 10:54

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I think that what John McDonald is aiming to do, is to give attendees all the info and tips they need to set up their own microscopes, or a microscope that a group (eg a support group) could use. The legal issues of how one might actually test the blood are complex, and certainly not anything which the Foundation can afford to get involved with at the moment. But as Jsandman has shown us, this technology is really pretty straightforward, and the results can be very valuable, as long as individuals can figure a way to walk through the sanitary and legal minefield.

Chris
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 Posted: Tue May 16th, 2006 21:19

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Got our reservations for the conference, hotel & flights. We'll see you all there.



____________________
sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia, fall 2017 - osteoarthritis
Frans
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 Posted: Wed May 17th, 2006 08:01

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Trevor,

I hope you still have seats available, because I just booked my flight. I will arrive at LAX at friday 15.45 and will fly back monday 17.55.

I there anyone who wants to share a room from friday till monday? :cool:  James, you coming?  ;)

All best, Frans



____________________
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)
Prof Trevor Marshall
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 Posted: Wed May 17th, 2006 09:26

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Chris,
I was told that Hilton still has 60 rooms available at the $99 rate. The Group booking code is AUT. Maybe that will make it easier for the central reservations folks to find it:)

carol
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 Posted: Thu May 18th, 2006 11:39

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I just made my hotel reservations and could get the $99 rate on Saturday night only.  I am arriving on Thursday (6/15) and will not depart until Tuesday (6/20).

Is there a way to get the conference rate for more than one of these 5 nights?

Carol



____________________
rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests: 25-D=32; 1,25-D=65...10/07 entered Phase 5...Xodol daily, Celebrex as needed...last 25-D=7 (5/14)...Benicar 40mg/4 hour, no abx
aeda007
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 Posted: Thu May 18th, 2006 12:30

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Carol I just made my reservation also and since I'm only going to stay one night I got the $99 rate.  Just luck I guess but my understanding was they were extending this rate beyond the actual conference time if you were staying through the conference.  May take Trevor to straighten it all out!



____________________
Dx=Diabetes 2/94 Sarc 12/96,Meds Actos Glyburide Glucophage. D test-4/17/06. 25D=6, 125,D=37, D Test-7/31/06 25D=5, 125,D=52 Wearing noirs. Started MP 6/29/2006 Benicar only. 7/14/2006 Started Mino.

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