Erica Ruble’s Symposium Story

erica_rubleFive years ago when my dad said, “I have mesothelioma,” I sat in disbelief. What was this disease? I could barely even pronounce it. What did this mean, for my dad, for me, for our family? A flood of emotions ran through me and the panic set in as I read about this orphan disease on the web. Within weeks my dad and mom were flying to New York for treatment while I was in Florida caring for my newborn baby, who was just a few weeks old. Our lives were changed forever.

My dad underwent every treatment option available but lost his courageous battle to mesothelioma in just 12 months. Feeling sad, angry, and wanting answers, I flew to my first Symposium in Washington DC. Three days later, I left DC with a purpose and plan. Following the lead of Shelly Kozicki, who lost her husband to mesothelioma, I decided to fund a research grant. In my heart, I felt my dad suffered and died for no reason. This was my chance to give meaning and purpose to his death by helping others. My dad was the type of man who believed in “doing the right thing.” Now it was my time to follow in his footsteps. To date, with the help of my family, I have raised over $207,000.00 for mesothelioma research. Each time a dollar is raised, I think of my dad and how his life is helping someone else’s life.

Attending the Symposium four years ago was one of the best decisions I ever made. Connecting with the community and sharing stories made me realize two things. First, I am NOT alone. Second, we CANNOT give up. We have to keep fighting for not only those who are sick but also for ourselves. If we don’t do this, who will?

I encourage the mesothelioma community to attend the Symposium in Las Vegas on March 7th and 8th. It is undeniably the only Symposium to encompass all facets of mesothelioma through advocacy, community, and research. Whether you are a patient, caregiver, supporter, or have lost a loved one, the Symposium will touch your life. We all have an opportunity and a chance in life to help others. This is your chance to not only help yourself but to make a difference and leave your imprint on the mesothelioma community.

FOR THE FOUNDATION: Bruce A. Waite Miles for Meso 5K

Bruce RunningJill Waite contacted the Meso Foundation earlier this year in hopes of planning her first fundraiser to honor her late father, Bruce Waite, who died from mesothelioma.

Bruce Waite on one of his daily runs.

Nearly ten years after his death, Jill has organized the first Bruce A. Waite Miles for Meso 5K in Ontario, OH on Sunday, September 23, just 3 days before Mesothelioma Awareness Day.  Bruce was a teacher with over thirty years of service to his students, and Jill has been overwhelmed by the outpouring of support that has come from her father’s former students, friends and family from all over the country.  She has learned even more about her dad and his legacy from the stories she has heard from the people coming out of the woodwork.

“One student told me Dad made the difference between prison and college for him.  One student wrote me that Dad sent him a congratulatory note as he graduated from college.   Every day, I end up in tears, not even from sadness, but from pride.  And to this man who had so much humility that he truly felt he had no impact, I look up to the sky and tell him this is the only time he was wrong,” says Jill.

Jill chose to organize a 5K in honor of her father because running was also a huge part of his life, never missing one of his daily runs for 33 years. She knew that 2012 was the year, stating “as I turned 50, I realized that I did not want to celebrate without Dad – so I decided it is the perfect year to have the Bruce A. Waite Miles for Meso 5K Run/Walk.”

This is not the Waite family’s first fundraising effort in honor of Bruce, in fact they have established a scholarship fund for graduating high school seniors interested in pursuing a career in education. One of the scholarship recipients will begin teaching this fall, and will be teaching some of the same literature Bruce taught.

Jill is committed to continuing to raise funds to support mesothelioma research, saying “If part of Dad’s legacy is to help raise monies for meso research so other families can be spared what we endured, then, as his daughter, I have no choice but to continue the fight.  I count it an honor.”

To find out more about the Bruce A. Waite Miles for Meso 5K, visit their website: www.brucewaite5k.com

Interested in hosting a fundraiser for the Meso Foundation? For more information on giving of your time and talents in your area and planning your own fundraiser, contact Sean Haynie at (703) 879-3823 or email him at shaynie@curemeso.org.  You can also find out more information on being mentored by our Fundraising Co-Chairs Shelly Kozicki and Erica Ruble by visiting our website at http://www.curemeso.org.

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.