dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
So eager to hear anything....
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
A friend of mine who was able to go called me during Dr B's speach. I was able to hear some of it...he wanted everyone to promise not to give up the fight until we win!!! I heard a few of the other speaches as well...it sounded very good.
It sounded like it was a good turnout from the backround noise. My friend said they bused a lot of people in.
Sorry that is all I have to report right now. Im sure others will post later.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
It will end in about 15 minutes.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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dontlikeliver
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Member # 4749
posted
Thanks, I hope more reports will keep coming in.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
hopefully it will be on News 12 Westchester soon, I would think they'd have it on if anyone and maybe the soonest. Edited to say: i now see you need to pay for getting news on this site, sorry.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
I was there. It was very inspiring. Good turnout, well organized and the media was there.
I can't remember everything but there were people from all over the country. I saw a car from Alaska in the parking lot.
I was fortunate in a way. While I have a nasty 100mi. commute from NW CT to work in NY, I probably had the shortest trip to the rally. I drove a few miles to the meeting place and the shuttle bus ended up bringing me right up the street from my workplace. How wierd is that!
Posts: 184 | From CT | Registered: Aug 2006
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Michelle M
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Member # 7200
posted
Awesome, Badtick!
Tell us more.
We're drooling for details...!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I'm guessing a good 300 people. There was basically just enough to fill the area that we had. There were people everywhere with piles of signs to give out to anyone who didn't have one.
A half dozen people spoke. Dr. B, Pat from LDA and some politician types that really got the crowd fired up. Also some patients from different parts of the country spoke. I was in tears at one point. Dr. B and the guy from NY were very inspirational. I don't remember his name though.
Supposedly there is a new NY congressman? on our side. He could not make it though. He was bitten and got immediate tx w- just a phone call to his MD. Thus avoiding infection, but realizes that might not have happened under the new guidelines.
Unfortunately I spent a good deal of my time hiding from the media since I was on an extended 3hr lunch break. There seemed to be a half dozen cameras set up but I don't recall which stations. Lots of interviews going on everywhere.
Sorry my report is so sketchy. Wicked lyme brain today. Overall I was real impressed with the way it went. I was not expecting much for hanging around a crowd of sick people. You would have never known it. They all looked so healthy. ha ha.
The people who were the sickest didn't come.
Posts: 8430 | From Not available | Registered: Oct 2000
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
300 is a very decent number.
Thank you all, we've made it!
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
There was a great turnout. I would say over 300 people. We were also able to get the word out to hundreds of people driving by and entering the medical facility. I would say it was a great success. Posts: 1603 | From ny | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
What a success!
Lots of WONDERFUL people there. Yes.. from all over the place. AMAZING!
LOTS of media.. and Andy from Open Eye pictures was there filming for the Lyme documentary.
Our bus arrived at noon. Many of us got up at 4 AM to catch the bus from Maryland and places north. I got home at 10:30 PM. Six hour drive up.. six hours back... three hours there. LONG day! But worth it.
Forty people filled the bus.... from Delaware, Pennsylvania, New Jersey and Maryland. Actually the bus came for me at my stop.. and LEFT ME standing there!!!
There were LOTS of tractor trailers there.. and they didn't see me.. nor I them.. till they gave up and hit the highway headed north.. and as I saw them pass I jumped up and down and waved.. and luckily someone on the bus saw me!!! They had to BACK UP the highway to come get me! MY luck!!
Good thing they did come back.. I had 4 coolers filled with subs, ice, drinks, etc... and lots of signs.. the passenger list.. etc!
Nice bus driver.. Billy... who managed to put up with a bus full of Lyme patients ALL day! Three cheers for him!
I was real impressed with the number of folks there.. and the number of GREAT signs. So many versions of signs telling Wormser he should head back to the manure pile... and take his IDSA guidelines with him. I LOVED the signs!!! It took a lot of work!!
I saw press folks taking LOTS of pictures of the signs and people there. Kids from basically new born age.. to adults in their 80's.. a varied crowd.
Met LOTS of new folks this time... everyone with a Lyme story. I was impressed with all the new folks and their interest in the political actions. No doubt we are on a roll!
Saw LOTS of old friends from LDA and Lyme Net.. too many to mention them all... and some lurkers who don't post too! It was so wonderful to see them!!! How they keep going and going.. I do not know. Bless them all for a beautiful effort.
Dr. B spoke.. in his usual debonaire fashion.. and he moved the crowd. At one point he told everyone to turn to their neighbor next to them to say hi. Said we need to stick together to make progress... MY words .. not his.
Rain held off.. oh how good that was! Not cold at all... and with a zillion hugs.. I couldn't have been cold if I wanted to!
And there was LOTS of traffic at the place where we were... a very busy intersection.. and they waved and beeped as they went by... even the tractor trailers. Police force was there in full alert.. and were very helpful.
A group of about 20 folks took the shuttle into Westchester Medical Center after the speeches.. and Dr. B and Pat Smith went with them. I don't know what they did.. but I saw lots of smiles on their faces when they got off the bus at the protest site.
From what was said in the speeches... we have a good number of politicians on our side now.. and they delivered very passionate speeches. Pat Smith gave a good "pump up the crowd" speech .. as did the individual patients.
As we approached the area on the bus.. keeping in mind we didn't know where it was... we could see the whole place was lit up like a moving neon lime green sign. It actually looked kinda like a busy flea market on a Saturday morning... but BETTER!!!
My personal opinion was it was well organized.. had very good planning.. and had good accomadations for all.
There was a lot of roadside area where folks marched back and forth.. and LOTS of signs hanging off a huge chain link fence. It seemed where there weren't people.. there were signs. Any more folks there and it could have been considered to be very crowded! We sure "filled the site".. that's for sure.
Sorry my brain is NOT doing well.. VERY tired. I hope some of this makes sense.. and gives you a feeling of the excitment in the air.. and of the wonderful people who all took time out of their lives to be there to represent ALL of us.
I gotta say and HUGE thank you to all those who "babysit me". I get VERY discombobled in a crowd. They were so kind to keep me in line.. on track.. and waited on me hand and foot. I wouldn't have made it there and back without their help.
And a HUGE thank you to EVERONE who worked hard to put this together. I give it an A+.
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
I had a great time!
The whole day was great. Easy commute there, good weather, port a potties that were spotless, busy intersection for good visibilty. Even my commute home was pleasant. I am glad I went.
All the people involved did a great job. The shuttle bus people, the guys at the parking lot, the people manning the check in and the media table. You should all be proud of yourselves. Thank you.
And my favorite chant of the day "Tic Tac Toe Wormsers' gotta go." It's funny enough to be catchy and sounded great being shouted by three hundred people.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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posted
Tinny....your report brought tears to my eyes! thanks for the excellent report!!
I know it took alot out of everybody, and I am grateful for all of you that went!!
I hope Wormser is still squirming!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Thank you Paul, Tincup, and others for your detailed responses! I'm so happy it went well; you all got the points acrosst to all, and the WEATHER COOPERATED!
Be prepared, it was 70 here 2 days ago; today 20 with ZERO WINDCHILL! The timing of the event could NOT have been better planned.
Thank you to ALL WHO PLANNED/ORGANIZED this huge movement of S U C C E S S !!!! The many hours it took to coordinate this in spite of being so SICK with lyme disease!
To all lyme patients who attended in spite of being so deathly ill with your lyme, GOD BLESS YOU ALL for putting your health on the line to attend for yourself and the rest of us in USA, the land of FREEDOMS unlimited!
Each of you made this a SUCCESS! I had hoped to see coverage on NATIONAL news, but none on CBS. I even phoned our Des Moines CBS station letting them know about this protest at 815 AM asking that they get coverage from NYC to AIR LOCALLY for us Iowans to enjoy.
Someone from Des Moines was to email me as I didn't want the phone waking up my dear hubby who puts up with me on the noisy keyboard here until 2-3 AM!! No one did, but I'll call again tomorrow to see if they can get anything together!!
Yes, I made the 3 calls! I hope someone from the EAST coast posts about them TALKING TO A LIVE PERSON AND PERHAPS ONE OF THE 3 VIPS WE WERE CALLING!!
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Way to go everyone!! On behalf of the Canadian Lyme Disease Foundation a great big thanks and well done!!
Posts: 144 | From British Columbia | Registered: Sep 2002
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Nothing better I can say but thank you all for what you've done and for standing up for those that were unable.
My sincere thanks and gratitude.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
I'm so impressed -- thank you one and all for making this wonderful effort on behalf of all of us!!
Posts: 13171 | From San Francisco | Registered: May 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
WOW!!!!
THANKS to all who went. I am only sorry I could not be there this time. Perhaps at the next event.
Is there a next step?
Did Wormsy come out to shake everyone's hand
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
it was incredible and inspiring. the only other person with lyme i'd met prior to the rally was annie (who i love - hi annie! ), so it was incredible for me to be in a space with so many people who just.. understand, in a way that others in my life, even my closest friends, can't.
i got all choked up when people were speaking.. it was really overwhelming, in the best way.
thanks to everyone who showed up.. the turnout was amazing!!!
posted
I have to make this Quick, the high winds in the area keep knocking me off line. Glad you didn't have todays weather. I couldn't say it any better than it's already been said, but I just wanted to also say Thank-you.Posts: 158 | From PA. | Registered: Jul 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Thanks to all of you who organized, made the signs, drove the busses, gave the interviews, chanted the cheers, SHOWED UP!!!!
Thanks to you all and a big hug
Andie
Posts: 2549 | From never never land | Registered: May 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Sending thanks from the west coast to the east coast. You are much appreciated.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good morning..
I need pictures. Any pictures that I can use for at least 5 articles I need to write... or help others with. I took some pics..... but also was VERY busy with other things. (Yes, running my mouth was a big part of that).
I especially need you to identify anyone in the pictures... by name and town and state.
I can't pay for the pictures... but note I also don't charge for the articles I write or the help I provide for the other ones. It would be a "donation for the good of all" IF you were to let me use them.
THANKS!
Gotta go to town and develop mine....
Oh.. Email them to me please... almost forgot that part.
posted
Just wanted to congratulate all for a job well done!! Would have loved to been there. Was with you in spirit. Thank you so much to everyone who participated or helped to organize!!!!!!!!!!! You all have my eternal gratitude. Suzy
Posts: 260 | From Virginia | Registered: Jul 2004
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bettyg
Unregistered
posted
Yes, TINCUP, your help to us all is INVALUABLE; can't put a dollar amount on ALL your help to all!
I hope you all have some great photos to scan and email to Tincup for us all TO ENJOY! God bless you one and all!
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posted
Sounds wonderful. I wish I could have been there with you. I flew over to the USA this week with my son - went to see Dr J. What a wonderful experience it was. What a shame that we flew out 2 days too early to join you (but I had to go back to work in England today).
Would have been great to meet some fellow lymies. As it was, it was fantastic to feel so accepted chez Dr J. I think the ducks here look at me with bewilderment. Chiz
Posts: 67 | From UK | Registered: Oct 2006
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
The Rally was well organized (great job everyone) everyone that spoke did a excellent job also give them a hand. It was great to see some old friends Tincup,Annie and some new ones as well. also met some very nice people on the shuttle bus ride to the site, one which just got a IV from new jersey very sad story. Tincup it is always nice to see you.
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Thank you to all who went to the protest and spoke for me and my family! I wish I could have been there. Bigs huggsssss from Michigan...
Thank you also for letting us know how it went.
Posts: 6641 | From Michigan | Registered: Jun 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Just got home tonight. Another Lymenet member and I drove up together and stayed with one of my sons and his wife in Manhattan for two nights.
The entire experience was amazing! It began with spending all those hours in the car with an almost complete stranger, but realizing how much we had in common and understood about each other without saying a word! We were even finishing sentences for each other today!
Yesterday after the rally, when we realized we had left behind some key equipment, like a chair and some food, among other things, we returned to the site and there were still a few organizers finishing packing up.
The funniest thing was that we saw large numbers of DUCKS (real ones!) all around us! It was really funny and we had planned to take photos on the way back, but realized too late that we were on a one way road!
We were resourceful and managed to find our way back. My new friend and I had much in common, but we seemed to complement each other with our cognitive difficulties, making it possible to find our way back to the parking lot where we had begun and then to the highways back into the city.
I am so glad I made the extra effort to go to NY for this. It was great to meet so many from Lymenet and to hear Dr. B speak. We also rode the shuttle with him and had a chance to speak with him individually. He was very approachable.
He also found what four people missed the night before (two Lymies and two "normals"). As we were making signs too late at night I realized too late that I had left the R out of chronic. I decided to just add a little one in. Only Dr. B noticed that I had put it in the wrong place in the word! I told him that I really had been a good speller in my prior life!
I hope there will be many more opportunities for those who couldn't make it this week to participate in upcoming rallies coming to locations near you. I know I'll be there again!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
who were the lyme patients who spoke?
can you put LYMENET NAMES on them and describe what they dressed like in photos so we can put a face with the name here?
any photos of TINCUP? I hope someone got her; TC, I want to admire your face; I've enjoyed your "ducky" personality for 27 months now! ha
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posted
TC didn't speak at this event. she was too busy making sure the scrolling list of those who have passed away from Lyme disease was placed in perfect and peaceful position cascading down the hill along side of us, posted in the journal news and linked on the Lyme Rights website - and TC as usual was thanking and supporting everyone who came.
that's just the kind of gal she is. never looking for anything other than help and peace for those suffering. a pic would never speak as many words as she represents.
btw, that list struck a major chord and we were all blown away by it.
betty, there are more pics at the Lyme Rights Protest website of everyone as well..
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
Mo, I looked at all there yesterday; THE SCROLL LIST OF NAMES got to me, and I assumed it was all those who had passed from lyme disease;
The hill made it much more effective beng vertical vs. horizonal!
Mo, my RED-headed friend; now, I'll remember you!
Thanks for the input on my many questions. I do hope someone got TC's photo though I'm sure too she does NOT WANT IT UP ON ANY BOARDS!
You are right, so humble; 1 in 1 million! that's our TINCUP! GO GET EM GIRL!
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bettyg
Unregistered
posted
up for more reading about the PROTEST RESULTS
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