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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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| Posts: | 17283 |
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Posted: Mon Apr 17th, 2006 20:45 |
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Freddie,
That's good news. It will be great to see you and Sue again. We do not anticipate any trouble reaching our attendee goal. Many folks have sent us PMs and emails that they are coming.
Best,
Meg
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bookdad
Member in Phase 3
| Joined: | Tue Aug 16th, 2005 |
| Location: | Riverdale, Utah USA |
| Posts: | 262 |
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Posted: Wed Apr 19th, 2006 15:38 |
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Okay, I couldn't come. I am a workin stiff. So please share the pics, the info and the materials with the rest of us 
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Sarcoidosis/lungs RA Ph1Nov05 Ph2Mar06 Ph3Aug06 lite exp r/t to work cover up NoIRs Ph5 Aug 09
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jillbc
Guests visiting Phase 1/2/3
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Posted: Wed Apr 19th, 2006 18:01 |
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Hi, the fisherman and I are very interested in coming. But we will have to arrange oxygen supplies. Any ideas? He will need a concentrator or may be able to get by with 5 or 6 medium size tanks. We have tickets "in the bank" with Air Canada. We had to cancel a previous reservation because of his illness and they have the money, so, we can't think of a better way to use the tickets than coming to the conference. It will be great to meet some of the folks that we have been following on the protocol.
Here's hoping we make it.
jill and the fisherman
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jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1797 |
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Posted: Wed Apr 19th, 2006 20:09 |
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My dad (also on the MP) and I will be there.
Look forward to seeing some from the Chicago Conference and meeting new MP friends.
Joyce Waterhouse, Ph.D.
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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katydid
Guests visiting Phase 1/2/3
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Posted: Thu Apr 20th, 2006 00:51 |
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Would dearly love to come, but flights aren't possible for those on SSD, I'm afraid. I'll be there in spirit, though, and hope you create DVD's!!!
Kathy
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CFS.D's 12/05 25D-7, 1,25D-19,not Quest.Vicodin 10-325 1 PRN.Flexeril 10 mg qday.Westhroid 60 mg.12/27/05 Avoid sun,D Noir's.
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Apr 20th, 2006 01:18 |
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Katy
Sorry you can't be there. There is nothing quite the same as being a part of a huge group of folks who are also recovering, sitting around the hallways, chatting, exchanging experiences and info. The DVDs are an important resource, but I am still sad you can't make it in person.
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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| Posts: | 17283 |
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Posted: Thu Apr 20th, 2006 04:12 |
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Jill,
Here is an article on traveling with oxygen that should provide the answers you are looking for.
I'm looking forward to meeting you and the fisherman!
Best,
Meg
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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Posted: Thu Apr 20th, 2006 07:15 |
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Bookdad,
I will try to take candid photos with my digital camera and share them online as the conference unfolds. I'm so happy that many of the attendees have added photo avatars to their posts. This will make even those we've never met seem familiar. Thanks for being such a supportive member of the website.
Best,
Meg
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Apr 20th, 2006 09:17 |
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OK, the Registration and Information page is now live at URL
http://www.autoimmunityresearch.org/lax2006.htm
Please register immediately, so that we can get a good head count. You can come back in a day or two to pay the fee (just click the "Visa/Mastercard Donate" button at the bottom of that page when you have your payment ready, or you can mail us a check).
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sue from Indy
Member in Phase 3
| Joined: | Tue Jun 21st, 2005 |
| Location: | Indiana USA |
| Posts: | 559 |
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Posted: Thu Apr 20th, 2006 15:44 |
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My husband and I are coming! I booked flight ($520 for both RT) and the registration fee. Is there a code number yet for the hotel?
We are both excited about coming and meeting you and many of the other MPers.
Keeping on, Sue
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Sarcoidosis/skin, lungs, joints, MPh1 7/05, Ph2 11/05, Mod Ph2 8/06, Ph312/06, NoIRs, 25D =8 Oct08
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scooker48
Member in Phase 3
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Posted: Thu Apr 20th, 2006 18:03 |
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I am hoping to find someone to share a hotel room with to get the $99 rate; I will arrive late Friday evening (about 11 p.m.) and depart Sunday afternoon.
I am quiet and respectful.
Please send me a PM.
Sherry
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 11/7/09 D25 at 6, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal. ACE still high at 113 on 11/7/09.
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Fri Apr 21st, 2006 04:13 |
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Note to all:
We have a strong Community here who encourage and support each other..
You may wish to make contact with others in your area by private message. Thank you to all, Barb ...
Dr Marshall wrote:
OK, the Registration and Information page is now live at URL
http://www.autoimmunityresearch.org/lax2006.htm
Please register immediately, so that we can get a good head count. You can come back in a day or two to pay the fee (just click the "Visa/Mastercard Donate" button at the bottom of that page when you have your payment ready, or you can mail us a check).
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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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LeAnne
Member in Phase 3
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Posted: Fri Apr 21st, 2006 12:31 |
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Barb,
I have made contacts in the following states: SC,GA,WV,KY,MS,ME,VT,NH,MA,RI,DL,IN,AR,ND,WY,and FL.
I basically mentioned the upcoming conference, and asked about making donations to ARF, and asking about their status of whether or not they were on the MP. I have gotten several replies..... some stating they would make donations, some thanking me for telling them about the conference. There are some who have told me why they either dropped doing the protocol or didn't do it at all.
I think it is good to contact the members of the board in order to follow up on people and find out "where they are". They may just need encouraging, or they may not have a full understanding of the science. I know one person said they didn't do it because they tried high doses of minocycline and didn't have ANY reaction. He also said his blood work was in "normal" range. People like this obviously do not have a clear understanding of the protocol and will slip through the cracks.
I think it would be a good idea for people to contact their own areas and be mentors to the newbies that join.
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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tonglen
Guests visiting Phase 1/2/3
| Joined: | Mon Apr 18th, 2005 |
| Location: | USA |
| Posts: | 9 |
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Posted: Fri Apr 21st, 2006 16:05 |
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Reenie wrote:
If I recall from a leader hosting a local Phoenix conference for FMS, I believe she was able to get her pic in the AZ Paper and get a blurb and an announcement, free of charge, about the conference, simply by contacting the media.
I would think someone from ARF might be able to contact one of the large papers in LA for that. I think it would need to be "someone in charge" rather than a member of the site.
Hi All,
As Reenie suggests,
may I add: contacting the health/lifestyle reporter at the media outlet directly and asking for the appropriate fax numbers and e-mail
for forwarding press releases to their attention. Initial contact at least a month prior to the event, follow-up phone calls to the reporter or their direct section/segment editor to pitch the story idea/angle so they can get the story slotted for their production schedule. Often, that will at least get you a "brief" run in the "coming attractions" announcing the event and possibly a longer feature article. KCAL, KABC, LA Times, Orange County Register, Daily Breeze, the inland empire papers like the San Bernandino Sun, Riverside Press-Enterprise, alternatives like the LA Weekly, etc. Maybe something on the foundation letterhead "for immediate release" with the appropriate call back contact info.
fwiw.
best regards,
Brian
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tonglen
Sarc biopsy diagnosed 09/04.
1,25-D 59 pg/ml 25-D 36 ng/ml 12/04 at Quest.
1,25-D 50 pg/ml 25-D 40 ng/ml 04/06/05.
1,25-D 41 pg/ml 25-D 37 ng/ml 09/12/05 Quest.
1,25-D 29 pg/ml 25-D 9 ng/ml 04/06/06 Quest.
Benicar 04/07/05 Phase 2 09/05
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DNStog
Moderator
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Posted: Fri Apr 21st, 2006 20:48 |
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After much ado, my sister can get off work and will be traveling with me...should say getting me to the LAX conference.
I called Hilton's 800 number and they couldn't find a rate for ARF. Did I call too early or the wrong hotel chain?
Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynaud's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Apr 21st, 2006 22:08 |
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Too early. Apparently it takes a 3-5 business days for these events to be entered into the Hilton's master computer bank. We only signed the confirmation agreement on Wednesday.
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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Posted: Sat Apr 22nd, 2006 02:39 |
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Brian,
Thanks for the helpful hints. I hope you will be joining us.
Donna,
Great news. I'm looking forward to meeting you.
Best,
Meg
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3930 |
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Posted: Sat Apr 22nd, 2006 20:30 |
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FLIGHT:
OK I just booked airline flight for 2 -- Wahoo! See you all in LA!
HOTEL:
Attendant still couldn't find Autoimmunity Research Foundation conference details and since we do want our reservation prices and credits awarded to the conference block, I will wait until MONDAY when the sales department will return and can be contacted. The phone attendant did say it usually doesn't take more than 3 days to get conferences set up, but said they had been busy so Monday is better.
ARF:
I submitted my registration information with a note in the address field there would be 2 of us, but will likely send a check via mail because the current system really doesn't deal with quantities and my goal is to have both attend. A QTY box would be help maybe?
But most of all, very excited to attend this conference.--JRF
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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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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Apr 22nd, 2006 21:05 |
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JRF said "the current system really doesn't deal with quantities and my goal is to have both attend. A QTY box would be help maybe?"
The problem is that we print badges from this info. I really don't want a lot of folks walking around with the same name on them. Two registration submissions is cleaner, I think
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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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| Posts: | 17283 |
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Posted: Sun Apr 23rd, 2006 06:53 |
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For those who are coming to LA early and/or staying awhile or who will be accompanied by family/friends who will be looking for interesting things to do in LA here are some websites for tourists:
l.a.4beginners.com
All Los Angeles Tours
Looking forward to seeing everyone,
Meg
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