posted
There will be a fundraiser and work-in-progress screening of the Lyme disease documentary "Under Our Skin" on Saturday, Oct. 14. Admission is $5, and there will be an opportunity to donate more to the cause at the silent auction following the screening and Q & A with the film makers.(Proceeds go towards the cost of completing the film).
When: 1 pm Saturday, October 14, 2006 Where: El Camino Hospital Cafeteria (in rear) 2500 Grant Rd, Mountain View CA * For more info and a list of silent auction items: www.openeyepictures.org/auctionPosts: 991 | From California | Registered: Feb 2006
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trails
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posted
really excited about this! bringing my tissues coz just the trailer makes me cry my eyeballs out! and bringing extra cash and a notebook for networking--addresses and such.
is there anything planned about having a petition or educating about lyme bills that might need some attention right now?
This film seems like a great oportunity for so much activism and face to face meeting of people and education! and fund raising....
sorry I got so excited that I need to lay down now. Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
thank you for mentioning this... i wouldn't miss it!
yes.. the trailer makes me cry... but it is
exactly what is needed to make people understand
what we go through. BTW... if you are local to this
event, there is still time to bring in items for
auction.
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
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Melanie Reber
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posted
I will be there!
Would anyone close to Mt. View like to organize a post-screening get together to meet each other?
SForsgren
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posted
I will be there as well.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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trails
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posted
up! for west coasters tonight....
Posts: 1950 | From New Mexico | Registered: Sep 2001
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kam
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How did this go? I would have liked to have been there.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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trails
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kam it hasnt happened yet---it will happen this weekend---any chance you can get here?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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posted
Me too, me too!!!! Would love to meet all you folks, as well.
Tissue sounds like a good idea...
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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kam
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posted
NOT RIGHT NOW TRAILS. I AM HAVING TROUBLE GETTING TO THE LAUNDRY MAT RIGHT NOW.
LOOKING FORWARD TO HEARING HOW IT GOES THOUGH.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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yes keep us posted a post flash gathering is in order
There are lots of place on the el camino with healthy food or a park (oops -- no too many bugs) thanks for posting jbal
2 mag
Posts: 20 | From Northern California | Registered: Sep 2006
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robi
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posted
I have suspected I am on the WRONG coast. Now I know for sure. Have a good time ya'll....... Hugs to all but especially my buddies Melanie and Trails
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Melanie Reber
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posted
Up!
Hey Robi... Seems like for years everything has been happening on YOUR coast, so I'm not feeling all that sorry for ya at the moment
Miss ya though, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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Tincup
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posted
Three cheers for their efforts.. even though they didn't bring it here for ME to see!
- i seem to be a bit off today - too much twitching and a fuzzy head - had to crash today i do not think i have the energy to make it down - - unless i feel great - in the am i live in near red bluff - so it is about a 4 hour drive
seeing the trailer made me cry - how sad -so many lives - stopped because of the great cover-up.. Only God gets us through it all !
--and maybe we'll all get to meet some day
2mag
Posts: 20 | From Northern California | Registered: Sep 2006
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Melanie Reber
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posted
So...
I have my waterproof mascara, my extra tissues, and my directions there and back
Last call! Posts: 7052 | From Colorado | Registered: Mar 2003
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Just wanted to say what an awesome time I had at the screening. It was so great to meet eveybody -- trails, Melanie, Dolphin lady, Scott, and of course hang out with my pal minimonkey. To connect with another human being with Lyme is wonderful, being in a room with *scores* of us made my heart want to leap out of my chest.
I am about to do a horrible job of remembering everything and being coherent. But I'll try.
First, we watched the trailer that I'm sure everyone has seen. After that, we previewed about 35 minutes or so of the project. It was great to see some of the stories and more detail and see where they are going with this.
We got to see more story from the woman from the preview who got told that she was a good looking woman who just wanted attention, and whose name eludes me at the moment. (Mandy?) Her husband said a few things that were very moving about what it's like to watch her go through everything and he mareveled at how much the medical community doesn't seem to understand or acknowledge how devastating the effects are on people.
There were a couple of clips from Will&Grace and the Simpsons, as well as an interview with the woman from the Real World (Seattle?) who has Lyme, basically showing how mainstream media seem to think it's ok to poke fun inexplicably at people who have Lyme.
35 minutes seemed way too short...it just made me even more anxious for the final product! I have such high hopes that this film blows the lid off the whole Lyme thing and gets more people in the know. I'm very excited. And it was nice to be able to thank the filmmakers.
I am so impressed with what they have so far. Some parts gave me shivers, and there was some humor too, which was great. There was one part about a Lime tree that had everyone in stitches.
Afterwards, there was a question and answer session. Info I gleaned from that . . .
- There is no set plan for distribution yet, as they still need to complete mostly the editing process. They still need about $200,000 to complete the project...if anyone knows of anyone willing or desirous of donating, of course please have them go to the website. I think end of Summer 2007 is their hopeful release date.
- We did not see a lot of footage about the whole political controversy over Lyme in the preview, but this will be covered in the final product. *Many* people in the audience expressed strongly a desire to see this covered in depth.
- The subject of Plum Island/Lab 257/Operation paperclip was brought up as people wondered if this was going to be included. The filmmakers said that they were working on following the money and funding as far as that was concerned.
I got the impression that this would not be focused on in depth, but that it might be made mention of. But as the film is not yet complete, it's hard for them to say exactly what will or won't be included. They will (I hope I am remembering right) mention co-infections.
- There were a couple clips of Amy Tan in the preview (yay!). And I think I recall them saying that they were in contact with Daryl Hall, but that they had contacted the press secretary for...oh dear my brain is going...is it the governor of Tennessee? And the press person was not forthcoming about whether he has/had Lyme or not.
- There was a question about whether they would be including the (already somewhat infamous) recent debate between Dr. Stricker and Wormser. Apparently, their cameras were not allowed to film that, although there is a possibility I believe of them getting .mp3 audio.
I know there is so much more that has fallen out of my brain. The food was wonderful, and a big shout out to the Mountain View people for hosting this. Thank you!
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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Tincup
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posted
Thanks for the detailed account! I've waited up to see if someone would report back.. wishing I was there.
2mag
Posts: 20 | From Northern California | Registered: Sep 2006
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bettyg
Unregistered
posted
Alison, thanks for your summary on last night's events! Good hearing who was there and that you all met afterwards!
I've not seen the trailer yet; will have to go to the library to see since I have DIAL-UP! Thanks again for your input. Bettyg
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kam
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I, too, am not able to view the trailer although I do have cable connection for my ISP server.
Thanks for taking the time and brain power to report back to us.
I, too, wish I could have been there. One of these days, I will be able to be out and about more.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
Hmm. Wondering if it would be possible to purchase the 35 min trailer on it.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Tincup
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posted
How about a review from the other party animals that were there?
Melanie Reber
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posted
Hello All,
Not sure I qualify as ``a party animal''...but I will try to give a report from my seat Sometimes, it takes awhile for my thoughts to come together into any sort of a cohesive manner. But, I will do my best.
Forgive me if I repeat what has already been said. I think Allison P. did a wonderful job...thanks so much Allison!
First though, I would really like to thank the Mountain View Support Group for sponsoring this event, AND Open Eye for their willingness to share the film so far with us and also being open to the Q&A afterwards!
It was very much appreciated to have this special opportunity to glimpse what is forthcoming.
Next, I want to be sure and thank Scott F. for all of his hard work. I am simply amazed at what he is accomplishing within this group, and nationally. AND, he is a sweetie too, at that!
I am sure that thanks go out to many others who worked to put this event together, so please forgive me for not remembering your names, and please also accept my most sincere gratitude for your part in this as well.
It was also wonderful to meet a few Lymenet friends for the first time, and to meet up again with a couple of ``older'' LymeNet friends. (Thanks Trails, for the tissue...I sure needed it.)
Because I have dial-up, I had not really seen the trailers...except for the very first one many months ago...so; I was profoundly touched with what was shared yesterday. It is my belief that this WILL open many eyes...oops, sorry for that... but I suppose that is the goal, right?
OK, on to the film... Clips were shown of Dr. Jones at his trail, Dr. Jemsek at his trail, and the Lyme rally in CT.
An amazing clip was about Dr. A. McDonald who has been working for the past 20 years tying Bb and Alzheimer's together. Simply amazing.
The short profiles of TBD patient accounts interspersed within the film were powerful and heart wrenching. Thank you to each who participated in sharing your personal insights.
Yes, a few TV clips were used from comedies. Although I suppose this did add emotional relief for some. I personally found it very disturbing...but that is just me...and I can understand why they were used.
There were also a few clips from ``other'' physicians with the opposite view (i.e. IDSA)...and this too I found disturbing. Perhaps mostly because the film was not ``finished'' and subtitled names were not added as of yet, so it bothered me to hear such inaccuracies without knowing the source. Again, my own personal view, which we were assured, would be ``fixed'' in the final product.
The storyline thus far did follow one basic ``character''. Although she certainly is not fictional. She is beautiful, intelligent, and optimistic. It shows her going through what she must on a daily basis to endure the ramifications of what TBDs have done to her body. She gives personal insight to what she has been through as far as trying to find help, and it is heart breaking to put it mildly.
The film does a wonderful job of showing what TBDs can do to patients by letting you see symptoms from mild to moderate to severe.
It also shows that by the very wide-ranging nature of these diseases, many have been misdiagnosed or undiagnosed, therefore have been delayed in treatment, and now are facing possible lifetime maintenance therapy, disability or death.
I would have liked to of seen more covered on the reasons for this. More about the testing inaccuracies, two standards of care, clinical diagnosis, education, co-infections, etc.
And possibly, this too will be covered. But, I do realize that this is such a huge and complicated endeavor, that the film makers simply cannot cover everything. THAT would be a 6 hour movie...to barely scratch the surface.
I am sure I am forgetting important things...but that is all I can remember to comment on at the moment.
Once again, thank you to the Mountain View Support group, and to Open Eye productions!
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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trails
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posted
Thanks to Alison for such a fantastic report!
It was a packed room with people having to stand if they came in late! great turnout! Thanks melanie for saving us SEATS!!!
I got to bid on some items at the silent auction and even WON some of the bids! So I left with some cool stuff and having "donated" to a great cause.
The 35 minutes of film is really gripping. This film has so much potential and i think they are doing a really great job with the over 300 hours of film they have to weed through!!!
The food looked fantastic the donators of items and the bakers and the artists and everyone did a super awesome job! I have lots of tips and pointers for the folks that put this gathering together as someone who has done a fair amount of producing fund raisers in the past. I think they might have learned from trial and error though!
As Alison said---it was really heartwarming to meet lymenetters and other lymies face to face and we coulda made a small pond with our tears shed!
I am so glad I was able to attend this event! Thanks to everyone who made it HAPPEN! trails
and tinny---I partied in the chatroom too late last night with my virtual martini. Posts: 1950 | From New Mexico | Registered: Sep 2001
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trails
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posted
obviously melanie and alison have much better reporting skills than I -- I nominate them to be official lymenet reporters on future events!
Also--someone asked if you could purchase the 35 min bnit--at this point no, and I dont think they want to do that right now, but they ARE going to be having other fundraisers in other cities with this same format---so get ready --- and get involved---you may be able to bring it to your town soon!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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SForsgren
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posted
I was so pleased to see a standing room only crowd at this exciting event and to meet so many of my fellow Lymenet friends. It was a great event and I can't wait for the film to be released so that the world at large can see the true story of what we deal with daily.
It was great to meet Ali, Trails, DolphinLady, Melanie and others! Thank you all for being there and supporting the film!
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Thanks Alison for the excellent reporting skills!
It was heartening to see such a strong turnout. The room was full. My guess would be about 120 folks judging from the number of seats and folks standing.
Huge thanks to Karen for her help in organizing the event, to Scott for his on-going help, to the Mountain View Lyme Group, the film makers and to everyone who showed up in support of the film.
I look forward to seeing the final version which is scheduled for the first half of next year if I remember correctly.
And last but not least, it was a genuine pleasure meeting face to face with the fellow lymenetters that attended. Big hugs to all!
Posts: 925 | From California | Registered: Sep 2004
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