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» LymeNet Flash » Questions and Discussion » Activism » NYT Lyme Disease Protest- Sept 17th

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Author Topic: NYT Lyme Disease Protest- Sept 17th
KarlaL
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NYT Lyme Disease Protest- Sept 17th

A silent candlelight vigil will be held in front of the New York Times building in Midtown Manhattan on Wednesday, September 17th from 11am to 1:30pm.

We are using the NYT as a symbol for the media as a whole and trying to draw attention to the general underreporting of Lyme disease.

The goal is to help bring Lyme disease into the forefront of public discourse through art and activism.

Butoh dancers will be performing at the event. Butoh is an avant-garde dance form that came out of Japan after WWII as an expression of the suffering.

This will be a peaceful, silent protest. Anyone acting outside these parameters will be respectively escorted away from the protest by marshals.

We're asking people to:

– Dress in all black. Green armbands will be provided.

– Bring a white candlestick with tinfoil wrapped around the bottom.

– We're attempting to rent 15 to 30 wheelchairs so people can rest when needed. If you have a wheel chair please let us know and plan to bring it.

– We're attempting to raise funds to have printed protest signs. If we can't raise funds we will ask people to make their own signs with a choice of specific slogans. More on this as we get closer to the protest date. If you're willing to contribute to paying for signs or have printing connections please contact us.

– Check weather reports the day of and plan to bring umbrellas in case it rains.

More info will be provided as the event gets closer. This event is being organized by a group of Lyme patients from around the country. Josh Cutler, who organized the IDSA protest, will be part of this event along with a number of Lyme group leaders. For more information, contact:[email protected]

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
Abxnomore
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Thanks for posting this Karla. Another excellent idea.

The contact info is cut off. Is that because we can't post emails. I probably answered my own question.

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KarlaL
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The contact email address was cut off because the on-line forum that I copied the original notice from doesn't print emails.

This event now has a Facebook page: https://www.facebook.com/events/1475202696060072

For more information, contact:[email protected]

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
KarlaL
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New York Times Lyme Protest: Butoh on Eighth
Posted on August 28, 2014 by Regina Weichert

For complete story and photos of Butoh dancers, go to: http://www.lymenation.net/

As summer winds up in New York City, many Manhattanites are relaxing at the beach. Not so grass-roots Lyme advocates from around the country, who are amping up for a demonstration in front of the New York Times building on Wednesday, September 17th. The protest’s aims – to raise awareness of the Lyme pandemic, and to ask for ongoing and in-depth media involvement to investigate the seriousness of the illness and what blocks development of a better response to it.
This will be a silent vigil, expressing the silence that currently surrounds Lyme. Protesters will wear black with green armbands, hold lit candles and carry signs with slogans such as “Silence won’t stop an epidemic,” “Lyme is an epidemic: people need to know,” and “No news is not good news.” The demonstrators do not have a specific beef with the New York Times, but as the third largest newspaper in the United States, and one whose website got close to 1,400,000 hits in the last hour alone, it’s a powerful place to draw awareness to Lyme. In addition, Butoh dancers from Vangeline Theater will perform at the protest, conveying the suffering of Lyme patients through their movements. Butoh is an anti-establishment art form that evolved in Japan after World War II, and like Lyme is notoriously hard to define.

Donations have covered the cost of signage and thirty wheelchairs for use by Lyme patients who are too weak to stand during the protest. Protest organizers seek to raise additional funds to cover an air media campaign with airplane banners and skywriting. If funded, airplane banners will be flown over New York City beaches on Labor Day weekend, getting triple the viewing audience of a normal day. Skywriting happens at a high altitude due to post 9/11 airspace regulations – the words are as big as skyscrapers!

Five planes will be used to write the sky message, to be viewed by an estimated 6 million people the day of the protest. The skywriting will connect to a social media campaign and enable people to support research by donating to the Lyme Research Alliance. Cost for the airplane banner is $3000, and the skywriting is $25,000. Protest organizers say some in the Lyme community have balked at the skywriting idea and cost, deeming it frivolous. However it’s much cheaper than a full page ad in the New York Times Sunday Magazine (cost $100,000), and could have great impact in terms of views, social media engagement and fundraising for the Lyme cause.

The Times protest is part of an ongoing effort by Lyme activists to make Lyme more visible through demonstrations at iconic locations. Their last protest was at the Infectious Diseases Society of America (IDSA) headquarters in May. Many Lyme patients and practitioners believe the IDSA guidelines for the treatment of Lyme are inadequate, and are causing suffering rather than curing it. ”This protest is about people feeling entitled to stand up and say ‘I deserve to live,’” one Lyme activist said.

This week several foundations have donated to create an emergency fund for Ebola, with 2240 infected and 1229 dead from the virus so far. Millions of people are now sick from Lyme and yet there’s no emergency funding for Lyme patients. We need to do better.

NEW YORK TIMES LYME PROTEST INFORMATION

• Date: Wednesday, September 17, 2014, rain or shine
• Time: 11 am to 1:30 pm
• Location: New York Times building, 620 Eighth Avenue, New York, NY 10018

• If you plan to attend, protest organizers ask that you wear black – green armbands will be provided.

• For more information: email [email protected] or go to www.facebook.com/events/1475202696060072

• To donate: go to Paypal, click “send” in the upper left corner, and enter [email protected] and the amount you wish to donate. In the message section, indicate that your donation is for the NYT Protest.

Twystoflyme is a 501(c)3 organization and all donations are fully tax-deductible.

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
KarlaL
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Dear Friends and Associates,

This seems to be the year when so much is happening!
Sept. 17 Lyme Disease Silent Candlelight Vigil for AWARENESS

The Lyme community will be holding a peaceful, silent vigil in front of the New York Times on Wednesday, September 17th from 11am to 1:30pm in order to raise awareness about Lyme disease. We are using the NYT as a symbol of the media as a whole and the general lack of media coverage of this public health crisis. We were wondering if you would attend and give a short speech.

I, Jill Auerbach, Chairperson of the Hudson Valley Lyme Disease Association, am supporting this event because of the dire need for awareness and the lack of funding for Tick-borne diseases (TBD) including Lyme disease. I hope you will consider joining us at this event to demonstrate your concern for this serious problem that continues to increase and spread, creating an enormous financial burden on our healthcare and social support systems.

Most of the Lyme groups in New York will participate; additionally, surrounding states are bringing groups. such as Virginia-based NatCapLyme. The police are working with us on obtaining appropriate permits and we are hiring our own security for the event. Invitations are being sent to the reporters at the NY Science-Times to attend the event.

Our goal is to get mainstream press for this event and so it would make a significant difference if you were standing with us. PLEASE join us!

The event is being organized and run by:
Jessica Bernstein, Psy.D.
United Lyme Action, Executive Director
Event Organizer

---------------------------------
MID HUDSON VALLEY & ALBANY
-------------------------------------
I have a train schedule for people to meet in Poughkeepsie or join us by meeting the train elsewhere along the way to NYC as we did for the May 2013 WORLDWIDE LYME EVENT.

I am looking for someone from each local: Albany, Kingston, New Paltz, Newburgh, Rockland, Woodstock, etc. to help by organizing the best mode of transportation from your area and get people together to meet and go the NYC together -- or meet us at the train in Poughkeepsie. PLEASE volunteer and send me your name to let me know you will do this with the Lyme patients from your support group or local area.

Grand Central Station is on 42nd Street as is the event, so that should be easy! And Penn Station is about the same distance.

More at: https://www.facebook.com/events/1475202696060072
--------------------------

NYC & LONG ISLAND, NEW JERSEY, MASS, CT, RI
---------------------
Will someone volunteer to do what I am doing for your locale!

WE CAN DO IT, WE ARE POWERFUL TOGETHER
Jill

Jill Auerbach <[email protected]>

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KarlaL

Posts: 694 | From New Lebanon, NY | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
bambi 4 michael
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I think that what you all are doing is awesome. My husband died on January 22, 2014. He was diagnosed in 2011 after I researched his symptoms on Web Md. I requested testing while he was in a hospital. Was contacted by the Jefferson County Department of Health with confirmation. He received 10 days of Doxy. Needless to say it did not work. He saw a few doctors and was told there was nothing they could do for him. I suspect he had lyme disease for about 8 years before diagnosis. He was miserable. He committed suicide in January. I tell everyone to get tested because he never had a rash. If you ever do a protest for Alabama, please let me know.

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Bambi 4 Michael

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KarlaL
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Forwarded message from Jill Auerbach on NYTimes Vigil,

Dear Friends and Associates from Upstate NY,

I hope you will join us at this silent peaceful vigil to bring awareness to Lyme and Tickborne disease, the suffering of so many sick people, lack of research, tick reduction, an accurate test, and to ask that the media help us with the power of the pen to bring about these goals. A prime example is the wonderful investigative reporting by the Poughkeepsie Journal!

I will be bringing a group with me on the train if you wish to join us. Do not be concerned you do not have to speak, it is a silent vigil and there are press packets for the media with a few people who are assigned to speak with them.

This is the information to use or distribute about: the vigil, the transportation and maps.

If anyone has additional information that I should add, please let me know ASAP.

I will have to send everyone who is going a package later once it is finalized by the organizer.

Please distribute and ask people to e-mail me at [email protected] if they are going with our group on the 8:33 am train from Poughkeepsie, NY. They should plan to arrive at the station about 8 am. Best parking is early (see map in packet).

Thank you,
Jill


NYTimes Vigil Information and additional train schedules


SILENT CANDLELIGHT VIGIL AT NY TIMES

620 8th Ave, New York, NY 10018 - 41ST Street & 8TH Avenue

WEDNESDAY, SEPTEMBER 17, 11 am - 1:30 pm

1. Remember this is silent

2. There are designated press people so if the press asks to talk with you, please refer them to Monte Skall, Jill Auerbach, or Josh Cutler

3. If the media insists on speaking with you, please refer to the talking points which I will get to you later during the week.

WHAT TO WEAR

Come dressed in black. You will be given green arm bands and will hold a candle. Some people will be asked to hold a sign.

- Bring a white candlestick with tinfoil wrapped around the bottom.

- Bring an umbrella if it is supposed to rain.

- There are plans to have 30 wheelchairs available to rest when needed.

BATHROOMS

There are 2 hotels on 41st and 8th, a Starbucks, or MacDonald's on just about every block. If you walk north to 43rd street, or east to 7th Ave, you've got several choices or east. Everything public is pleasant north and east. Nothing much is south or west of there.
Hilton times Square: 41st & 42nd St. entrances between 7th & 8th Ave
Hotel Carter: 43rd St. between 7th & 8th Ave.
Weston Hotel: Corner 43rd St. and 8th Ave.
Hotels can nicely handle everybody and have huge lobbies and are accessible.

NOTE: PORT AUTHORITY BUS TERMINAL: DO NOT GO THERE. NOT CLEAN OR SAFE!

FOR MORE INFORMATION: https://www.facebook.com/events/1475202696060072
Or
CONTACT: [email protected]

IF YOU WISH TO JOIN ME TO GO ON THE TRAIN FROM POUGHKEEPSIE PLEASE CONTACT ME AS SOON AS POSSIBLE at: [email protected]

After that keep an eye on your e-mail for any updates about meeting place and other information. Be certain to include your phone number in case there are any last minute changes and I have to get in touch with you.


TRANSPORTATION FROM UPSTATE
Penn Station is 0.6 miles from the New York Times Building
Grand Central Terminal is 0.8 miles from the New York Times Building
_______________________________________________________________________________________
Metro North - Poughkeepsie NY to Grand Central

Departure
8:33 AM to 10:15 AM 102 THROUGH TRAIN OFF PEAK
Fare: $17.00 or disabled $11.25 one way

Return
2:43 PM to 4:33 PM 110 THROUGH TRAIN OFF PEAK
3:18 PM to 5:04 PM 106 THROUGH TRAIN OFF PEAK
Fare: $17.00 or disabled $11.25 one way

For those coming with me we will meet at the station between 8-8:10 am. Parking may be tight in the garage so the earlier you get here the better chance to obtain a good parking spot there. I will probably e-mail you on Monday or Tuesday with final plans.

Those coming from Ulster Co. (New Paltz or Kingston area), there is a bus to the Poughkeepsie Train Station which might be easiest. Another option is a bus to NYC from near your home.

Amtrak Schedule - Rensselaer Train Station to Penn Station

Departure:
6:55 am to 9:20 am or
8:20 am to 10:50 am

Return
2:20 pm to 4:50 pm or
3:15 pm to 5:45 pm
Fare: $41 each way, value


Metro North - Wassaic To Grand Central

Departure
6:32 AM 8:31 AM 119 THROUGH TRAIN PEAK $24.00 or disabled $11.50
6:53 AM 8:57 AM 124 THROUGH TRAIN PEAK $24.00 or disabled $11.50
8:30 AM 10:44 AM 134 TRANSFER AT SOUTHEAST (AR 9:10 AM & LV 9:15 AM) $17.75 or disabled $11.50

Return
3:43 PM 5:52 PM 129 THROUGH TRAIN OFF PEAK
$17.75 or disabled $11.50

* Senior rate and disabled are the same on Metro North
From Grand Central there seems to be a subway shuttle to 42nd and "Times Sq" (Grand Central / Times Square Shuttle)- it appears there is an exit on 40th street. I do have to check about that. Otherwise we can walk.

Jill [email protected] or 845-454-9414

PS. If the cost is too much for your budget but you would like to go, let me know and the HVLDA will assist so it is possible

You are unlikely to get parking on the right side of the train tracks. There is better availability on the left side (river side).Try for the parking garage as there is an entrance into the station from there. Notice the disabled parking areas. And if the garage and parking is full, then parking is available On Rinaldi Blvd which is across Main Street (marked in yellow at the bottom of the map).

--------------------
KarlaL

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Abxnomore
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Get info. Any idea how many people are expected to attend.

I'll be there. Anyone else going??

Posts: 5187 | From Lyme Zone | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Tincup
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Bambi,

So very sorry to hear about your husband's situation. This should not be happening. Good to see you online talking about it. Thank you for that. If we can do anything for you, please let us know.

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Catgirl
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I just saw Emergence (part 2 of Under Our Skin). The protestors just dropped on the ground, all wearing green. I think it makes a huge impact. I think it's a good idea for the middle of the day somewhere, NYC, SF, Boston, etc.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Abxnomore
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I went to the vigil. There was decent turnout, at least 100 people but it was hard to tell. Lot of press, hopefully something will come out of this.
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poppy
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Thanks to all who went and otherwise supported this effort.
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Abxnomore
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I didn't meet anyone who participates on Lymenet.

Did anyone from the site go?

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Robin123
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Bambi - very sorry to hear about your husband - thanks for coming here to let us know - you are in our thoughts -
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Mvdr
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Bambi, I'm so sorry for your loss. He was lucky to have you.
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KarlaL
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Begin forwarded message:

From: Jessica Bernstein <[email protected]>
Date: September 24, 2014 11:48:05 AM EDT
To: Jessica Bernstein <[email protected]>
Subject: NYT Protest Cover Article

Front cover article in Truthout about the NYT Lyme protest. If we want Truthout to keep giving us such great coverage, we'v got to show them that there are lots of people who are liking and sharing these articles on Facebook (go to the top of the article and "like" "share" and "tweet" it). Let's override The Daily Beast smear campaign about chronic Lyme and the protest by creating our press with this article. PLEASE like and share this on FACEBOOK, post about it on blogs, and share this email.

Remember not to post the article on your blog (just the link) because we want people going to the Truthout page to like and share it.

http://www.truth-out.org/news/item/26397-new-yorkers-call-lyme-disease-the-new-plague

Thanks,

Jessica Bernstein, Psy.D.

--------------------
KarlaL

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KarlaL
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I came down with Jill Auerbach's group from Poughkeepsie. Sorry that I didn't meet you.

--------------------
KarlaL

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Abxnomore
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Same here, it would have been nice. Many I spoke to were self treating and doing alternative treatments.

[ 09-25-2014, 06:48 PM: Message edited by: Abxnomore ]

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