posted
Hi all, I feel like I am beating a dead horse here but I have been getting direct e-mails from Under Our Skin Producers and am doing my best to help.
The turnouts for Boston, Newburyport & the Cape have been low to the point that they are worried here is the note: Ann -
We just got feedback that hardly ANYONE came to see UNDER OUR SKIN last night in CAPE COD. Would you mind sending an email out to everyone on your list about our one week run in North Falmouth, MA on Cape Cod?
IT'S CRUCIAL WE GET MORE PEOPLE THERE!!!
Here is the info:
UNDER OUR SKIN in Cape Cod at the REGAL CINEMAS NICKELODEON 5 in North Falmouth, MA. It will be there for a week from 8/7 - 8/13.
REGAL CINEMAS NICKELODEON 5 Address 742 Nathan Ellis Highway Route 151 North Falmouth, MA 02556 (508) 563-6510
San Diego a place where you don't even see ticks has had the highest turnout thus far. The reason they did was one woman went around to stores, coffee shops, doctor offices and everywhere she could think of passing out flyers, ect.
I did this yesterday in Newburyport, MA, I realize we are sick...I am sick too I had to drag myself out of bed to go yesterday. That is why we have to do it...because we are sick and for those too sick to even get out of bed.
We need people that aren't sick and don't have Lyme Disease to see the film like in San Diego but if they don't know about it they wont go.
Do any of you have an e-mail list or contact information for the support groups in MA? I am in NH so I dont have that information.
Also, do any of you know if Dr. D in his Cape office has anything posted about the movie and dates? I will call the Falmouth office but now they are closed.
Any advice or help anyone can offer is greatly appreciated by myself and the Under our Skin producers. They made the film for us now we need to help get it shown. They did their part now lets do ours!
Thanks, Ann
-------------------- If you keep doing nothing...nothing changes!
You may want to contact the LD state yahoo list in MA to make sure they are promoting this on their board?
You may also want to add (MA) to your post title to grab that select attention?
There is also a way to search members here based on location. That can be accomplished with the 'Directory' link above.
Local MA radio stations may do a PSA for you at no charge. And there is usually a site or two that has realtime updates on local news submitted by residents... might be something to check into?
Most larger cities have clubs or associations that may be interested (group ticket sales). Ideas may include film buffs, gardening clubs, church organizations, rotary clubs, scouts, PTA, etc etc.
There was a showing here a few months back at a local community college. Many came to attend for class credit.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I don't know about you, but I have spent a lot of time looking over the bulletin board at Starbucks while waiting for my latte... Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
LOL...Thanks Melanie! I will try those things you mentioned. I did call the Cape Cod newspaper and an article was posted in today's paper mentioning the N. Falmouth showings so hopefully that will help.
It's going to be a busy month between the MA and NH showings!
-------------------- If you keep doing nothing...nothing changes!
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I'm so impressed that you are even taking this on! Just 2 more words of advice... recruit and delegate!
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
If anyone wants to help UOS will mail you free the postcards with screening info and dates.
Another place I am going to ask that they be placed is in drug stores near the pharmacy counter. This is where people with Lyme are going to pick up their meds so I think it would be a good spot.
-------------------- If you keep doing nothing...nothing changes!
posted
I would encourage people to just buy some tickets, even if they can't personally attend. That is what I did for the Stamford, CT showing.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
Yes, or email friends and family let them know about it. Tell them since you are to sick to go maybe they can go in your honor? People like to help, they really do but they can't if we don't ask or give them the information.
Ask if they can forward the email & information to their friends so on and so forth. I just met through my sister's gf a woman the other day with Lyme. I don't have her e-mail but she does so she can forward it.
The people you have contact with may not have Lyme but they may be a friend of a friend with lyme.
-------------------- If you keep doing nothing...nothing changes!
posted
An award-winning documentary that tells of a gripping tale of microbes, medicine & money.
It's time to get TICKED OFF. . . bostonlyme.org is sponsoring a free educational reception following the August 9th screening of the the award-winning documentary, UNDER OUR SKIN at the Museum of Fine Arts in Boston.
The event will include a 20 minute discussion at the theater with a Lyme Disease Patient, a Lyme-Literate Doctor and a Lyme-Literate Clinical Psychologist. Immediately following the discussion, we will be hosting a free Reception at the Curry Student Center Ballroom on the Northeastern University Campus where there will be a Question and Answer session from a panel of Lyme-Literate Educators, Patients and Doctors. Legislators will be on hand to discuss current bills both on Beacon Hill and at the National Level.
UNDER OUR SKIN, The award-winning documentary will be playing at the Museum of Fine Arts, Boston from August 6 - 13, 2009.
Please join us for a very special free education event after the August 9th screening
To purchase tickets for the 8/9 movie screening at 3:00 pm, CLICK HERE
Movie Screening at the Museum of Fine Arts - Boston, MA - 3:00 pm
When you arrive at the movie screening, there will be a sign-in table where you can pick up your index cards to write down any questions you may think of during the movie.
Immediately after the movie, we will spend 20 minutes at the movie theater where you will hear from a Lyme Disease Patient, a Lyme Literate Doctor, and a Lyme Literate Clinical Psychologist.
When entering the movie theater, please look for the people wearing lime green t-shirts to sign in and get your index cards for the Q & A session at Northeastern University and to get your invitation and map to the free Education Event and Reception in the Curry Student Center Ballroom on the Northeastern University Campus. (Two blocks from the MFA.) At the end of the movie, be sure to hand in your questions to people wearing lime greet t-shirts.
Free Educational Event after the Movie - 5:30 pm
We will be hosting a free Question and Answer Session with a distinguished group of Leading Lyme Literate Doctors Patients and Advocates. We also hope to have legislators on hand to discuss the current legislation that is making its way on Beacon Hill to protect Doctors and to prevent insurance companies from restricting treatment.
There will also be informational tables with free tick removal kits, Lyme Disease information literature, local Lyme advocate groups, tick prevention information and iInformation on current Lyme Disease pending legislation.
In consideration of those with chemical sensitivity, we request attendees to refrain from wearing any scented products including perfumes, cologne, aftershave, hairspray and other strong fragrances. Thank You!
Agenda of Free Educational Event:
5:30 - 7:00 - Guest speakers by a panel of Lyme Disease Professionals, Advocates, and Patients 7:00 - 8:00 - Free information tables, literature, tick removal kits, and refreshments.
Northeastern University's Curry Student Center Ballroom ... CLICK HERE for map and directions from MFA Medical Professionals Biography Rex G. Carr, MD FAAPMR
Rex G. Carr, MD is a Board Certified Specialist in Physical Medicine and Rehabilitation. He currently has a private practice in Hanover, NH.
He has been evaluating and treating people with Chronic Pain and/or Chronic Fatigue from all causes for over 25 years. He has been evaluating and treating people for tick borne illness for over 10 years. Leo J. Shea III, Ph.D. Clinical Psychologist
Leo J. Shea III, Ph.D. is Clinical Assistant Professor of Rehabilitation Medicine at Rusk Institute, a division of the New York University Langone Medical Center. Prior to his present work with tick-borne and immunological disorders, he was Assistant Director of the NYU Brain Injury Day Treatment Program. Apart from his academic and clinical responsibilities at NYU Langone Medical Center, Dr. Shea is also President of Neuropsychological Evaluation and Treatment Services, P.C. with offices in New York City and Quincy, Massachusetts. His practice focuses on tick-borne diseases, traumatic brain injury, chronic illness, trauma and disaster management and provides cognitive remediation and psychotherapy to individuals and families. Dr. Shea is presently the Chairman Emeritus of the National Research Fund for Tick-borne Diseases, Inc. which funds scientific research at major medical and academic institutions. He also serves on the Scientific and Community Advisory Board for the study of Lyme disease at Stanford University Medical Center, on the Medical Advisory Board of Turn the Corner Foundation and on the Board of the International Lyme and Associated Diseases Society (ILADS). In the past five years, he has been instrumental in raising more than $2 million to fund research of tick-borne illnesses. Sheila M. Statlender, Ph.D Clinical Psychologist
Sheila M. Statlender, Ph.D. is a clinical psychologist in private practice in Newton Centre and Cambridge, Massachusetts. Dr. Statlender provides supportive counseling and assistance with healthcare advocacy to a number of Lyme disease patients and their families. She was one of five mental health practitioners to present a workshop on ``Psychosocial Issues in Lyme Disease'' at the 2008 ILADS Ninth Annual Scientific Session in San Francisco, CA., and is scheduled to present a similar workshop at the upcoming ILADS conference this Fall. Dr. Statlender has facilitated discussions after several screenings of ``Under Our Skin,'' and has presented to a number of professional and lay audiences on the impact of Lyme disease, including academic progress. Dr. Statlender's commitment to this arena derives from difficult personal experience: all three of her children became seriously ill with tick-borne disease, yet it took years to obtain a correct diagnosis and appropriate treatment for them. Her family's story is one of those included in ``Cure Unknown: Inside the Lyme Epidemic,'' written by Pamela Weintraub. Lyme Disease Patients Biography Allison Nevitt Lyme Disease Patient
The free educational event that is being organized after the movie, is to honor Allison, our friend who has been struggling to get healthy from Lyme Disease for many years. Allison's friends have donated their time and money to help put on this free event.
Allison realized something was wrong in 2005. She went from being a high-energy, compulsively organized mother and entrpreneur with a mind like a steel trap, to profound exhaustion, inability to remember things, getting lost going to work, waking up without sight and struggling to walk. It took 2 years to get a diagnosis. By that time she had Advanced Neurological Lyme Disease and was having seizures every day. Two years later, she still struggles to receive care, as insurance won't cover treatment for her Lyme-related complications of Dysautonomia and Chronic Inflammatory Demylineating Polyradiculoneuropathy.
Unable to work and relying on family and friends for the ordinary tasks of life, she lost her business. She feels lucky. She has supportive family and friends. Upon meeting other Lyme sufferers who don't she decided to stop feeling powerless and to fight. She began studying the history of Lyme Disease in the United States and learned how it is a perfect storm of all the flaws in our medical system. Public health matters are privatized to prioritize profits over patients. To address the travesty that is happening to Lyme patients, she had to become politically active. She began an awareness campaign on the 200,000+ member political site DailyKos and started writing in other venues on the internet. She is doing all that she can to raise awareness and get legislation passed to protect doctors and fund better research for understanding how to treat the disease and support patients.
Elise Brady Lyme Disease Patient
Elise is featured in the movie, Under Our Skin. She will be attending our free event at Northeastern University's Curry Center Ballroom on August 9, 2009 at 5:30.
After several miscarriages caused by the congenital transmission of Lyme disease, Elise gets pregnant again and gives birth. A mother and school administrator in Connecticut, she fears for her baby's life and health. Her Lyme literate physician wonders how many mothers unknowingly pass Lyme to their children through the womb, unaware that they themselves are infected or that Lyme can be passed from mother to child. Lyme Disease Advocates Biography Donna Castle Parent of Daughter with Lyme Disease
Donna has organized many screenings of Under Our Skin, is an advocate for North Central Massaschusetts and is also active in legislation to protect doctors.
Donna Castle is a Lyme advocate, support group leader (Nashoba Valley Medical Center in Ayer, MA) and mother. In the summer of 2005, she had received a phone call from a neurologist who diagnosed her then 25 year old daughter with ALS (Lou Gehrig's Disease). Fortunately, a close friend referred her to another neurologist in her area who re-diagnosed her with chronic Lyme disease mimicking ALS and began to treat her. Her daughter has been making gradual but steady progress ever since. After this experience, it became Donna's mission to prevent this from happening to anyone else.
If you or a loved one has ever been been bitten by a tick or suspect you have Lyme Disease, learn what you can do to help to pass legislation that protect doctors and funds research to find better testing and treatment modalities for this devastating disease.
-------------------- If you keep doing nothing...nothing changes!
posted
Well off to Boston praying for a good turnout! Feeling sick as a dog figures. I'll look great though no one will even know how awful I feel...lol Dana the U2 lady in the movie is me to a T.
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
posted
Just my 2 cents - San Diego is alive with ticks!!! The people who live there know it. North to Ventura County also. Would love to see it come to Orange County. If the web site for UOS would post an advertisement for an upcoming showing and give permission, I would take it to the local horse tack stores.
People with horses and pets are magnets for ticks. The vet hospitals have waiting rooms - a perfect place for a notice. -peedie
Posts: 641 | From So. CA | Registered: May 2008
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bettyg
Unregistered
posted
ann, please show CAPE COD NEEDS UNDER OUR SKIN ATTENDEES; then you will get the direct attetion of those in MASS., etc.
posted
I grew up in So. California and never even heard of a tick. I never saw any and still never do when I go home to visit. Orange county, LA county and San Diego County. So why they would have better turn out than New England showing's is beyond me. Obviously they are working harder to get the word out then we are.
The Boston turn out today was mediocre. We had more people come to the screening at my daughters middle school in tiny Stratham, NH then what came today in a major metropolitan city!
There were some there that were obviously sick and some in wheel chairs. Some that could hardly walk! I didn't feel well either and don't even live in MA... So don't tell me that one again please. I gave them the brochures that UOS provided and thanked them for coming out.
I wrote to all the MA support groups as suggested and called the papers. Not sure what else to do and not sure why people in MA aren't contacting UOS and volunteering to help??
Why should one person who is not even from Mass and an hour away be the only person showing up to give people information? One good thing was the LDA sent me brochures as well and many of the museum patrons took those as I passed out the UOS brochures. One was a doctor visiting the museum.
I hear lots of people from MA on here complaining. What about doing something about it?...Sorry for venting but a huge let down and I am tired of excuses. There are approx. 4.5 million people in the greater Boston area almost 3x the entire population of NH. So something isn't adding up!
posted
They need more advertising!!! Cape Cod is LOADED with ticks....and its full summer tourist season! I'm surprised the theater wasn't packed.
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I share your frustration. When UOS was opening in New York it was just a big yawn here on Lymenet. I swear there was more energy for the Ribbons Across America project a few months ago. I don't know where everyone's head is.
I really tried to move the posts and get people excited here. The reward for my effort was to have it moved from Medical to Activism where no one would see it.
As I said before, if we don't care enough to support and promote our own movie, a movie that can make such difference in people's understanding of Lyme, why should anyone else care?
Posts: 984 | From San Diego | Registered: Nov 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
For those who are doing things to make a difference...
Thank you very much!
Keep up the good work... and don't let those who don't pitch in stress you out.
posted
Thanks for the responses! I couldn't agree more Wild Condor and Parisa. MA showings are done as of Thursday so I will quit focusing on what could of been and focus on making it happen for the week long showing in Concord, NH. I already started an e-mail campaign last night urging people NH to show MA how it's done...lol I couldn't have said it better myself Parisa:
Lakes,
I share your frustration. When UOS was opening in New York it was just a big yawn here on Lymenet. I swear there was more energy for the Ribbons Across America project a few months ago. I don't know where everyone's head is.
I really tried to move the posts and get people excited here. The reward for my effort was to have it moved from Medical to Activism where no one would see it.
As I said before, if we don't care enough to support and promote our own movie, a movie that can make such difference in people's understanding of Lyme, why should anyone else care?
Thanks, Ann
-------------------- If you keep doing nothing...nothing changes!
posted
It bears repeating: Go to the movie, but if you can't, at least call the box office and buy some tickets. It will support the film.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
CALDA told me once that for any given effort, only about 10% of people actively participate.
One thing you could try is adervertising the movie in light of health care debate, which is attracting a lot of attention now.
Something like, "UOS underscores everything that has gone wrong with our current medical system, and how panels of non medical personnel deny care which leaves patient suffering needelessly for years"
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Interesting percentage Amanda. I wish I could have done more in Boston and wish that it could be shown when school is in so that perhaps college students could be recruited to help and also to see the film. It's such a big city hard to believe there were approx. 15 people on opening night.
I actually walked into the theatre after doing a double take to see if there were more in there somewhere...Not sure they were hiding the seats or what I thought but I couldn't believe it! LOL
Yes, perhaps a twist on it like you suggest on b or something may work. I am acyually going to try and find out who put together the Portsmouth, NH showing and how they got such a big draw. I know they had panelist and Dr. R and I was suprised that Dr. D wasn't scheduled to speak after the Cape Cod showing or at least one of them or Boston for that matter.
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I agree with Parisa. I tried too. It did seem like a yawn, like no one organization picked up the ball to help organize getting people into the theatres.
I even made the trip into NYC to see the film and was surprised that none of the support groups where in front of the theater giving out literature, fliers and such, all of which UOS had available. Instead there was a table set up in front of the theater promoting the next film festival.
I would have expected a lot of fan fare from the NY groups in helping promote the film. If we don't do it, who will?
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Start a facebook page. Seems like that is the best way to get anyone anywhere these days.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi Ann. I copied the information below from a post back in November about how our support group promoted "Under Our Skin."
Several members of our support group worked on promoting the film. We wanted medical professionals and elected officials to know that Lyme disease is in our state. Some members contacted elected officials, the media, and whoever they thought could benefit from seeing the film. I am sure they contacted many people that I don't know about.
I thought about who I wanted to be educated. For my part, I called department heads of different organizations and state departments. I told them I was a member of the support group here and that Lyme disease is in our state and we wanted to educate people about it. I told them about the film and asked if I could mail flyers to them with the film information and asked if they would they distribute the information to their staff.
Everyone I spoke with was very nice and receptive. I then sent a letter with the information we discussed and flyers about the film.
(When time is of the essence, you could always call these places first and follow-up with a fax regarding time and date of the showing.)
Some of the people I contacted were the heads or assistants to the heads of the Department of Health, State Epidemiologist, Parks Department (I told them there is a park ranger in the film), Department of Agriculture, Division of Forestry, universities and medical schools, university departments of biology, hospitals, nurse organizations, compounding pharmacies, public library system, and individual doctors (including those I had seen who would not consider that I could have Lyme disease).
I even passed out flyers in hospital elevators while giving a thirty second speech about Lyme disease in our state.
If you have flyers with the film information and you have time/energy, you may want to call some of these places and pass them out if you have not already done so. Call news stations and papers and see if they can do a story about the film and/or come to the actual screening.
I hope you have a good turnout!
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