Social Media Moment: Hiding Your Friends on Facebook

We have talked before about the importance of not sharing everything on your Facebook page. What tends to be the most common mistake in social media (regardless of the platform) is sharing too much or simply sharing with the wrong people. So it’s always good to take precautions.

Did you know, though, that you could be sharing without realizing? This unknown, and sometimes unwanted swapping of data is due to the default settings of your Facebook account. Once you have signed up, created your online identity, and logged on, Facebook already has you sharing more than just your favorite photos and current check-in’s. It’s also sharing those people in your network.

Why is this important to control?

You may want to be open and public with your own opinions, but there is the matter of friends you may want to keep hidden from the same public eye. You may not want to openly share with the world the people that populate your network. With your Friends list complete open to the public, anyone — anyone — can go through your Friends gallery, click on any name, and request a connection. If you know that you have a friend that may be a touch shy and unwilling to meet new people on a whim; or if you are protective of your network and wish to only share its membership with people you really know, protecting your Friends on Facebook is quite easy.

  1. Go to Facebook and log in (if you are not logged in already).
  2. Go to top-right corner of your Facebook page, there is a menu there that has your name, Find Friends, and Home. Single-click on your name. (You may also see your name under the “Facebook” logo at the top-left of your screen. You can click that, too, as that link also takes you to the right place.)
  3. You should see your “Friends” gallery to the right of your Statistics (your job, where you’re located, where you went to school, etc.). Go on and single-click your Friends gallery to enter it.
  4. At the very top of your Friends list, you will see towards the upper-right (just underneath your name) two buttons: “Edit” and “Find Friends.” Single-click the “Edit” button.

  1. A window appears that reads “Who can see your full friend list on your timeline?” and also shows (by default) a small icon of the world. Single-click the “globe” icon to reveal your options.
  2. In this drop menu of options, you can either have your Friends be:
    1. Public: This means everyone is visible to people who are friends with you and with casual people just looking at your webpage.
    2. Friends: Only your approved Friends will have access to your Friends list.
    3. Only Me: This option will make your Friends completely Private, so you and only you will be able to see your network.
    4. Custom: This takes a bit more planning but here you can make your Friends visible to the people in your network, just you, specific lists you create, or people tagged in photographs. Another option offered here is you can hide your Friends from specific people or lists in your network.
  3.  Choose your option and the “Edit” window closes automatically.

This is how you can keep your Friends and your network secure from unwanted attention. By locking down your network (the tightness of that lockdown clearly up to you), you can now protect your friends from unwanted or unwarranted contacts. At the Meso Foundation we know how serious you take your privacy, and if you are concerned about the privacy of your friends, as well, we are here to make sure when you update a status or share a photo, you do so safely and securely.

That addiction to Farmville, however…no, we can’t help you there. Sorry.

For more information on available resources and online communities, visit our website at http://www.curemeso.org.

A Social Media Moment: Knowing Boundaries

Our nurse-practitioner-of-infinite-awesome, Mary Hesdorffer, brought to my attention that on our Facebook page there has been more and more activity appearing, people ranging from mesothelioma survivors to those surviving loved ones lost. She mentioned to me that she got an impression from some new to Facebook that they were not sure what is appropriate and inappropriate to share on the Facebook platform. For many of our users, the visit to our online group or fan page is their first foray into the social network. Where do you begin to figure out the rules of engagement, as it were?

Well, your answer really is in what Facebook is all about, isn’t it? Facebook is a social network, so it’s all about being social. While completing your profile (which I suggest you do because the more complete profile, the easier it is to connect and interact with people) is important, it can be a bit daunting, especially if you classify yourself as a private person. The thing to keep in mind with Facebook is it is very much like any social interaction: you have boundaries, just as others do, and you must respect them.

This may sound funny, particularly from the guy who just last week was telling you to “Share! Share! Share!” Trust me — there is a method to my madness. Continue reading “A Social Media Moment: Knowing Boundaries” »

From the Headlines: Pro-Asbestos Lobbying Institute Announces Its Closing

Part of the struggle (and personal anger) in recognizing the serious threat of mesothelioma is a counter argument from lobbyists that asbestos, even in light of scientific studies that contradicts otherwise, is not a hazardous material if conditions are safe and optimal. This argument came to a rest in Montreal, Quebec, for one pro-lobbying group who announced they would be shutting down operations permanently.

As reported by the Ottawa Citizen, the government funded pro-asbestos lobby group Chrysotile Institute issued a notice over the weekend that they would be closing its doors and disbanding. Established in 1984, the Chrysotile Institute promoted an agenda of “as long as asbestos is handled in a safe and controlled manner, it causes little risk to workers.” Now, with this announcement, anti-asbestos interests are hoping for a trend to begin, turning arguments to their favor.

Parliament Member Pat Martin (NDP), a longtime critic of Canada’s asbestos industry and former miner himself, refers to the institute’s closing as a “death knell” for asbestos mining in his country.

“I see it as a real tipping point in the movement to get Canada out of the asbestos industry. Another demonstration of the death rattle of the asbestos industry.”

The significance of the Institute’s announcement of their dissolving released on Saturday, April 28 —International Workers’ Memorial Day, a day of commemoration for workers injured and killed around the world — was not lost on MP Martin.

“I’ve lost an awful lot of friends and colleagues to asbestos in my time as an asbestos miner and a carpenter in the building trades,” he told the Ottawa Citizen. “It was very poignant for me to learn that [the institute was closing] on the very day of mourning for injured and fallen workers with the flags at half mast – it was very, very fitting.”

In light of statistics such as the World Health Organization estimating that globally, more than 100,000 people die from asbestos-related illnesses and protests across Asia against asbestos exports, news such as this provides a touch of optimism that perhaps people are sitting up to take notice and the voices raised in awareness and opposition are finally being heard. We at the Meso Foundation also recognize the significance of the Institutes to close on such an important day. Perhaps this was, on the Chrysotile Institute’s part, a message they wanted to send.

Pure speculation, I know, but one can hope.

Bonnie Anderson, Meso Advocate

This month, one of our very own Meso Warriors is being honored by the New Jersey Work Environment Council for her mesothelioma advocacy. Nine-year meso survivor Bonnie Anderson is being recognized with a distinguished group of honorees including Lisa Jackson, the Administrator of the U.S. Environmental Protection Agency and Congressman Frank Pallone of NJ’s 6th Congressional District. Bonnie was chosen for “raising awareness about asbestos-caused mesothelioma by getting bills passed in New Jersey and Congress to designate September 26 as Mesothelioma Awareness Day and for winning a landmark lawsuit against ExxonMobil for secondhand exposure to asbestos.”

Bonnie was diagnosed with malignant peritoneal mesothelioma in 2002 after an excruciating year of testing and examination. Given her training as a middle school librarian, Bonnie immediately put her skills to work researching meso treatment options. In nine years, she has undergone six surgeries, multiple rounds of chemotherapy and radiation. Her activist spirit has served her well as she has worked to raise awareness about mesothelioma, and battle her insurance company to cover her treatments.

At one point, Bonnie, her husband John, and her daughter Darcy mounted a major campaign to get the coverage she needed to participate in a clinical trial. They contacted their senators, congress-people, the governor’s office, and the Department of Banking and Insurance. Bonnie connected with the New Jersey Department of Health and Senior Services who helped her find the resources to make her case. After directing letters, documentation, and phone calls from both her surgeon and her primary physician to the insurance company, Bonnie was able to speak with a director and the appeals board of the insurance company, telling them that without treatment she would die. The appeals board said they would “take her case into consideration,” but it was shockingly denied. Finally, after her surgeon spoke with the state level director of the insurance company, at last the company acquiesced, agreeing to cover treatment partially at first, then completely with just a co-pay. Bonnie’s perseverance and spirit ensured that she could access the care she needed.

Bonnie knows the importance of raising awareness, and uses her voice to educate her community about mesothelioma. She has secured proclamations of Mesothelioma Awareness Day in Union County, NJ and the state of New Jersey; as well as playing a pivotal role in having Mesothelioma Awareness Day recognized by both chambers (House and Senate) of the U.S. Congress. Bonnie gives presentations at local rotary clubs about mesothelioma, her own journey and what is being done to combat the disease. Her work with the New Jersey Work Environment Council includes presentations before the President’s Cancer Council on the Work Environment and circulating petitions to ban asbestos. For her next project, she has agreed to represent Meso patients in the National Health Council’s Patient Story Project, where her story will be included with other examples of people with chronic conditions to be used for advocacy.

Bonnie is a strong voice for meso patients and has accomplished great things. Bonnie says her strength and advocacy would not be possible without the support of her husband John, who she says “has always been the best caregiver and support, along with being an advocate with me.”

Mesothelioma: Unspoken Danger of 9/11

The Mesothelioma Applied Research Foundation reminds the public that 400,000 tons of asbestos were released in the air of Manhattan on September 11, 2001, making thousands of people at risk for the mesothelioma cancer.

On this September 11th, many will mourn, in public or privately, the loss of more than 2,500 lives in New York on 9/11/01. The Mesothelioma Applied Research Foundation acknowledges that few may be aware, however, that those who were lucky enough to survive the events of those day, as well as the first responders and bystanders, could still be in danger. Certainly we have all heard of the incidence of disease—ranging from depression to emphysema to cancer—among those who worked at Ground Zero in the days and months after 9/11. But very little has been written about mesothelioma, an almost-always fatal cancer that is caused by exposure to asbestos.

The World Trade Center officially opened in 1973, but some 400,000 tons of asbestos had already been installed for fireproofing and insulation and were lining the walls of the lower floors of the Twin Towers when the Environmental Protection Agency (EPA) declared it a “hazardous pollutant” in 1971.Virtually all of that asbestos is believed to have been released into the air when the towers collapsed 28 years later, to be inhaled by thousands— fleeing survivors, firefighters and other first responders, as well as by those who watched in horror from the streets below and then escaped the disaster site through the dense clouds of pollutants emanating from Ground Zero, not to mention the uncounted numbers upwind who may have unknowingly breathed asbestos fibers in the hours and days following the Towers’ collapse.

Tiny asbestos fibers, once inhaled, embed themselves in the soft tissue of the lungs. As many as 110,000 individuals are estimated to have suffered exposure to airborne asbestos on 9/11 and over the weeks and months that followed.Among the various serious conditions caused by asbestos inhalation, mesothelioma is the most deadly. Its symptoms (weight loss, persistent cough and respiratory infections, shortness of breath, digestive and bowel problems, pain in the chest and/or abdomen), as tumor mass grows on the lining of the lung, abdomen or heart, and invades vital organs, including the heart, liver, and/or intestines, may not be felt for 20 – 50 years after exposure.

Being a rare and under-reported illness (an estimated 3,500 cases or fewer recorded in the US each year), funding for the search for a cure has been hard to come by. Funding sources have been few, and for the past decade the Mesothelioma Applied Research Foundation has been the only source of peer-reviewed research funding and provider of patient support services.Nonetheless mesothelioma research funding, per death, has been extremely low, and even as recently as 2007, the NCI reported that mesothelioma receives as little as 9 times less funding than other cancers. As a result, only one treatment protocol, the combination of the chemotherapy drugs Pemetrexed and Cisplatin which offers a mean survival rate of approximately one year, is available to patients.