In his talk “Mesothelin: A New Target for Immunotherapy” Dr. Hassan discussed the novel therapies for the treatment of mesothelioma. Laboratory investigation, carried out by Dr. Ira Pastan, Dr. Hassan, and colleagues at the NCI, has demonstrated that mesothelin, a tumor antigen which was discovered at the NCI, is a useful target for tumor-specific therapy of malignant mesothelioma. Morab 009, a chimeric anti mesothelin monoclonal antibody, has completed a multi center trial and we expect to hear the results at the Annual  ASCO Meeting taking place in early June. (American Society of Clinical Oncology).

This evening, in his talk, Dr. Hassan outlined the approval process by which patients can become part of this trial.

Good candidates for this trial are generally those patients who have already had some type of treatment. For example, patients who are not good candidates for surgery or those who have had surgery in the past and patients who have had at least Alimta-based therapy would be considered good candidates.

The first step is an initial screening, beginning with the patient’s doctor and then a face-to-face interview with Hassan, his team, and all data from the patient’s physician. If, following the initial tests, the patient is found a suitable candidate, NCI will help with travel expenses to enable the patient to participate in the trial. “At no time,” Dr. Hassan assured, “either in the initial screening or in the trail itself is the patient charged for treatments.”

Some side effects have included weight gain and leg swelling, mainly coming from fluid retention, and a decrease in albumin, a blood protein. However, Dr. Hassan commented, “These side effects usually disappeared by the time of the patient’s discharge from the hospital.”

More information about this trial is available at the Meso Foundation by emailing mary@curemeso.org or by calling (703) 879-3820.

Mesothelin, defined by MedicineNet.com, is a protein found on cell surfaces. Certain antibodies bind themselves to mesotheliomas and other tumors, so soluble mesothelin-related proteins (SMR) are used to identify mesothelioma patients and to monitor the cancer’s progression of their disease. SMR concentrations tend to run higher with mesothelioma patients than patients battling other cancerous or pleural diseases, and SMR concentrations often correlate with tumor size and progression.

A 2011 recipient of the Meso Foundation’s Pioneer Award for breakthroughs in mesothelioma research, Dr. Hassan has focused his own trials on targeting mesothelin as a potential treatment of patients with mesothelioma. Dr. Hassan’s research began in the NCI laboratory and continues to this day.

If you missed tonight’s “Meet the Experts” presentation, you can replay Dr. Hassan’s talk or download it as one of our podcasts at our website.

Erica Iacono took a moment to chat with us at the Meso Foundation about how she and Janice began their collaboration to raise awareness. “We actually met through the Meso Foundation. My dad passed away in 2000 from mesothelioma, and I eventually got in touch with the Foundation, wanting to volunteer, raise awareness; but at the time, the Meso Foundation was a brand new organization so the volunteer network was limited.

“In 2005, Janice’s dad passed away and eventually she contacted the Foundation. They knew that I had been talking about doing a fundraiser in my area, so the Foundation connected us and the rest is history!”

The idea for a walk/run happened like most great ideas — it was an organic process. “At first we just emailed one another, corresponding and kicking around ideas,” Erica recalls. “Then Janice mentioned the idea of wanting to do a walk. Location wasn’t an issue as she lives on Long Island as does my mom and sisters. The big issue, aside from paperwork and administrative details, was timing. We finally decided having our first walk/run in Spring 2006.

“The day of the event — it was a literal monsoon. No kidding. We showed up to the park and were huddled under the awning of the bathroom, freaking out a bit. We expected no one to show up.”

Erica and Janice, however, were given a delightful surprise on their downpour of a day. “150 people showed up, wearing ponchos and brandishing huge umbrellas. Everyone walked. Everyone. In the rain. Once we were done, we continued with our schedule, held our raffle, and in the end we raised $20,000!”

This lesson of determination has carried them every year through their annual walk/run since then, and their numbers continue to grow. “We average about 150 to 200 people each year. We have our regulars — friends, family, and friends of family — but every year we welcome new walkers and runners, all dedicated in finding a cure.”

Erica and Janice are thrilled to be receiving this honor from the Meso Fondation. “We know that the work that we do helps the Foundation do the work that helps so many people. And we’re glad that we’ve been able to make something good come out of the tragedy of our dads passing away from mesothelioma.”

Have you made arrangements to join us — either virtually or physically — for this year’s symposium? The Meso Foundation Symposium 2012 takes place in Washington DC this year, at the Omni Shoreham Hotel. This year, along with our award recipients, guests will include Barbara Kimbark, PhD, Anna McCurdy, RN, Lee Krug, MD, and many others discussing a wide range of topics covering the latest research, new approaches to fundraising, and reflective moments with members of the meso community. With so many amazing people in attendance, come join us in Washington DC or join us online as we at the Meso Foundation ask you “What’s Your Question?”

Really? Come on. In the Google search “what can red wine treat” the search results claim that red wine can also help treat:

• Breast cancer
• Alzheimer’s Disease
• Diabetes
• Concussions

And this is just on the first page of results.

Patients and those battling cancer are often sent information by well-intentioned acquaintances to assist them in successfully treating their cancer.  It becomes part of the daily barrage of information gleaned through internet related resources as well as traditional news reports.  In addition to the risk of information overload, where the patient and family member can find themselves sent into the turmoil of indecision, or thrust into a state of doubt about decisions already made, this often leads to a delay in treatment or doubt where there was once a sense of certainty, of a decision well made.

That’s when the questions begin to fly:

• How do you sort out fact from fiction?
• How do you define a credible site of information?
• Who is “spinning” the story?

Remember from childhood: stop, look and listen before you react.  The media makes their living from viewers. If you hear of a new breakthrough in cancer medicine or new treatment for mesothelioma, remember that if you are seeing a mesothelioma expert or are working with the Foundation nine times out of ten we are aware of this science and would have shared it with you should it be ready for “prime time”.  Always question the source. Are you receiving the news directly into your inbox? Are you subscribing to a news feed? Again there are usually ulterior motives at play.  Scrutinize the source, follow the pathway.  Who is behind the website? A 501c designating a charity or is it a business that makes a living off of website hits or acquiring new members to their site? If a story is of interest, contact me. I like being the detective, delving into medical resources to ensure that you are getting accurate information without the spin but with a true explanation of what impact it might have on the lives of those with mesothelioma.  There are some very good fact checkers I personally like PubMed where I find the citations and know that the information is published in peer reviewed journals.  In addition I can read the entire article and know that the little piece that was pulled may not have given the full story or true ramifications of the science under question. If it is not in the medical literature I sometimes turn to Quackwatch which helps me to find the origin of a particular internet sensation that is making the rounds.  (One of the most famous is the Johns Hopkins Cancer Diet.  Hopkins has denied this as coming from their institution but it has been resurfacing for years.)

So consumer beware. Rarely is good information truly for free, and bad information can cost you dearly.

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.

The way I approach social media — blogging, podcasting, Facebook, Twitter, and so on — is what I call the “Bullhorn Doctrine.” Simply put, if I were to take what I tweet, or take my Facebook status, or something I were to say for a podcast, walk into a crowded room of strangers, and say it through a bullhorn, would I be comfortable doing that?

Of course, setting aside the whole idea of using a bullhorn which can be intimidating to begin with, you get the idea — before hitting “Update” or “Send” I take a moment and ask “How comfortable do I feel about making this statement?” Perhaps the biggest mistake people make in social networks is not realizing that unless Privacy filters are in place on your profile or a group page is set to “Private” (and both our Group or Fan page are “Public”), your words are shared with anyone and everyone on the Internet.

Now before you flee from your computer in a panic, this should give you a bit of perspective. Yes, I should think for just a moment before sending out any message; and this is empowering as I am the last say in what I do and do not share. I set boundaries for myself, and then it is entirely up to me whether or not I share whatever is on my mind.

Another good rule of thumb — if I ever have to stop and ask if something is “safe” to share, chances are I should keep it to myself.

A good example of a boundary I won’t cross: I will talk about my daughter, but I will not send out our location nor will I name her. I usually refer to her as “Sonic Boom” which is her online code name. If people ask me about my kid using her code name, I know those people know me only through my social networks. If they refer to her by name, then I know we’ve had previous contact before. (Usually that is a given.) I can still talk about my daughter and her accomplishments, but there are some safeguards in place.

Speaking of safeguards, remember that this control also applies to how much information you share in your profile. Just because Facebook wants a phone number and an address does not necessarily mean you have to give it up. (The more information you give, the easier it is for Facebook to design custom ads in the sidebars targeting you.) If you wish to give a name and a city, do so. It is also good before heading out into Facebook’s wild, wide open spaces, you review your Privacy Settings. You can find those under the Home menu under Privacy Settings, and a few extra security steps under Account Settings.

When visiting our Group or Fan page for the Meso Foundation, remember above all this is your community. The amount of sharing is not dictated by anyone other than you, and it is you who controls exactly how much you do or do not share. This is what a community is all about — a place where your thoughts, your opinions, and your words are safe and welcome.

Just remember to stick to a few basics in being social, and treat people with the same respect and dignity you expect for yourself, especially when it comes to your own personal boundaries.

“Hi there, I am wondering if you have any suggestions for raising money or awareness for this terrible disease? I am very keen to help in any way.”

Perhaps the best way to raise money and awareness for mesothelioma research is, not surprisingly, a fundraiser. Mesothelioma research fundraisers of various kinds happen not only in the United States, but around the world. Just recently, the third annual Miles for Meso South Florida 8K, organized by Meso Foundation volunteer, Larry Davis, brought together hundreds of runners and raised nearly $50,000 for mesothelioma research. This weekend, James Brennan, the Meso Foundation’s own Endurance Events Volunteer is running a 100 mile Ultramarathon in order to raise awareness for more research into mesothelioma while honoring his father who is a mesothelioma patient. Erica Ruble just organized a poker tournament benefiting mesothelioma research and the Meso Foundation. And many other events are already in the works in anticipation of Meso Awareness Day (September 26)

Whether it is something as epic as a 100 mile Ultramarathon, as simple as a letter writing campaign, or as creative as a writing a cookbook, the Meso Foundation believes that fundraisers serve two purposes: they raise money for research, and raise awareness. Fundraisers are also a chance to expand your creativity, putting personal resources, interests and skills to the test in developing a success.

But where to begin? And what do I do after Step 1?

Here are a few tips from the Meso Foundation on putting together a successful and fun fundraiser.

Decide on the kind of event you want to host and if the event will help you reach your goals. This is the part that is usually the most fun, but also the most infuriating — what do you want to do to raise money? Ideas bandied about between friends can be in endless supply, but eventually it should come down to one fundraiser (with a handful of others set aside for a follow-up if your first outing demands it). What you need to find is the kind of event where donors will (eagerly) give their money for something in return. Some of the more successful fundraisers have included, but are not limited to:

• Runs/ Walks
• Silent Auctions/ Raffles
• Sporting events (golf tournaments, soccer games, etc.)
• Poker Tournaments

The important thing in fundraising, whether as an individual or as part of a group is finding something that appeals to you. For example, one meso volunteer is an avid kayaker, so he is kayaking the Hudson River to honor his young daughter Linda, who was diagnosed with meso at the age of 16. The event can truly be anything you want it to be, provided it is clear for what organization or cause the money is being raised.

Give yourself time to plan. Fundraisers should never be planned on a whim. There are many factors to consider — date, time, location, publicity, and (of course) goals. All of these factors come into play when planning a successful fundraiser. Your planning should begin with a “To Do” list and “Timeline” for you and your team, or just yourself, in order to keep your fundraiser on track and on schedule. A planning schedule can be anywhere from two months to half-a-year, depending on the resources and scale of your fundraiser.

No matter how solid your plan appears, have a contingency plan in place. When planning your fundraiser, make sure your budget has a reasonable, manageable buffer in case of unforeseen expenses. If your event is reliant on the weather, find out if you can plan for a rain date. Try to imagine every worst-case scenario you and your support staff can think of, and then try and prepare for the problems you least expect.

Give your event a realistic goal. Telling people that you are trying to raise $25,000 is better than saying we are trying to raise as much money as possible, but make sure that your goal is reachable. You don’t want to have your goal be too modest (Raising $1,000 is easier than you might think.), but you also don’t want to make your goal unobtainable. ($500,000 isn’t a million dollars, but it is still half a million dollars.) Having a goal will motivate people to help you get there. If, perchance you find yourself reaching the goal early, discuss with your group the good and bad of increasing your goal; and, as mentioned before, let people know how those dollars will be spent. People like to know where their hard-earned dollars are going.

Publicize. Take advantage of any and all appropriate publicity opportunities to get word of your event out there. Press releases to local papers, free public events listings, email lists, public service announcements on local and university radio stations, and social media all work together to publicize your event. It is important to check in advance for deadlines of listings to ensure your event is publicized, and publicized at the appropriate time. We at the Meso Foundation are also happy to help spread the word through our own website, emails, newsletter, and social media channels, provided we are given proper notice. Again, this goes back to planning and time needed to properly publicize your event.

Contact our Community Fundraising Co-Chairs. Erica Ruble and Shelly Kozicki have been there and have done that. Between the two of them, they have raised nearly half a million dollars (that’s $500,000!) for mesothelioma research through events like trivia nights, golf tournaments, quartermanias, letter writing campaigns, poker tournaments, roller hockey tournaments, community garage sales, triathlons, and partnering with local grocery stores. They look forward to helping you hit the ground running and get your event started. If you would like to learn more about being mentored by one of our Community Fundraising Committee Co-Chairs, please email Jessica Barker at jbarker@curemeso.org.

There are still other things that you can do to plan for your mesothelioma research fundraiser, and we at the Meso Foundation offer you checklists and other resources to make sure your paperwork is in order, the donations are recorded correctly, and that the money reaches the right people.

For more information on planning your own fundraiser, contact Jessica Barker at (703) 879-3819, or email her at jbarker@curemeso.org. You can also find out more information on becoming involved by visiting www.curemeso.org/events.

Representing the Meso Foundation, I was delighted to be a part of this event that so closely aligns with our interests. This tissue bank is being established as a repository of asbestos-related-tumor tissue specimens and fluid samples from a highly exposed population of asbestos insulators in order to support research that aims to better understand the mechanisms of asbestos-induced cancer, and to develop interventions and cures for asbestos-related cancers, such as mesothelioma.

The Insultators Union General President, James A. Grogan, is currently issuing a call to action to approximately 8,000 insulators to participate by agreeing to donate tissue samples should they be diagnosed and treated for an asbestos-related disease.  He plans to soon expand participation in the ITB to other trade unions that also have high incidence of asbestos-related disease.

Tissue Banks are useful, important resources that researchers regularly rely on in order to advance their fields of study. In this case, they look to study actual samples from people with documented exposure to asbestos, in the laboratory to find new ways to diagnose, treat and prevent asbestos-related conditions, including mesothelioma.

In 2006, the Mesothelioma Applied Research Foundation joined with the University of Pittsburgh, University of Pennsylvania and New York University to establish the National Mesothelioma Virtual Bank (NMVB), the first tissue bank dealing with mesothelioma.  The NMVB collaborative effort is led by the Departments of Biomedical Informatics, Epidemiology, and Pathology at the University of Pittsburgh, and is funded by a grant from the National Institute of Occupational Health and Safety of the Centers for Disease Control and Prevention.

Speaking at the Insulators’ Medical Conference were Dr. Raja Flores, of Mount Sinai Medical Center, Dr. Michael Becich, University of Pittsburgh, Dr. Harvey Pass, NYU Langone Medical Center and Dr. Joseph Testa of Fox Chase Cancer Center.  The Meso Foundation’s own Mary Hesdorffer also gave an update on currently available mesothelioma clinical trials.

Early diagnosis and treatment of asbestos-related disease, particularly mesothelioma, is desperately needed.  The Meso Foundation was thrilled to participate in the Insulators Medical Conference and applauds the efforts and commitment of President Grogan and the Insulators Union on this initiative. It was also a delight for me to connect with others dedicated to eradicating this disease. My sincerest thanks to all of those who gave their time to talk with me; the Foundation’s Medical Liaison, Mary Hesdorffer; and our Government Affairs Coordinator, Jessica Barker. Please, if you are ever in attendance at one of these events and see us out and about, do not hesitate to talk with us. We are always happy to answer questions and share ideas and efforts in combatting mesothelioma, much as the International Association of Heat & Frost Insulators and Allied Workers and their partners at Mt. Sinai Medical Center were doing last week in Washington.

With my arrival to the Meso Foundation, I have decided to offer a new segment from time to time here on the blog. With “A Social Media Moment” we offer a quick tutorial and commentary on getting the most out of social media in order to raise awareness in the pursuit of a cure. —TM

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At the Meso Foundation we are all about mesothelioma awareness, and in our social media initiative one of our most powerful and influential tools is Facebook. With both a Group Page and a Fan Page, we are reaching out to the world with our message and advocacy, but in the brief time I’ve been on board I have noticed a trend that tends to go overlooked in one of our most powerful platforms. What I see is people going to our respective pages and “Liking” what they see (which is great – please keep doing that!) but not sharing what they like.

What’s the difference? Quite a bit, actually.

First, you’ll hear many seasoned social media experts go on (and on…) about the importance (or, no kidding — Return on Investment) of a “Like” on Facebook. The “Like” is very important in that it is easily trackable, and when you like a page or a news item — be it our own Foundation’s page, a friend’s funny picture of the day, or a song shared via Spotify — it is a trackable statistic. At a glance, you can see how many times your page or news item has been liked, and your own profile page lets your network know that you have liked something today.

This is where a “Like” on its own falls short. Let’s say, for example, a posting like “Pro-Asbestos Lobbying Institute Announces Its Closing” goes live on our blog. We post a link on Facebook back to the post, and you like it. The statistic shows up on the article itself and might appear on your profile page, depending on which “look” your Facebook timeline falls into.  Still, it is a statistic and one you can see at a glance…but how is that helping to spread awareness? Clicking the “Like” option on Facebook is still a terrific option, but what this does — and why it is so important to do, particularly for when you like Fan and Group pages — is that you become “subscribed” to that particular image, status update, or news item, so that you are notified once anyone comments or likes it as well. Good to know when you want to track topic interest or a conversation, but by itself not enough to raise awareness.

Sharing an item on Facebook, while not as easily trackable as a “Like,” is a far more powerful ways and means in spreading your message. Unlike the “Like” where your network subscribes to an item, with a “Share” members of your Facebook network will literally take the entire item — link, title, associated images — and place it in both their feeds and on their profile wall. This way, not only do they see it on their wall, but so will everyone in their respective networks.

Sharing an item is just as easy as liking an item. Look at the options on a Facebook post, and you should see they read from left-to-right is Like, Comment, and finally Share. Click on “Share” and add your own note or comment to the item.  Now instead of just a link and a public statistic, when shared the item itself is distributed throughout your network and, potentially, networks of your friends. At a glance people see the image, the story, or the full status update, offering direct access to blogposts and other websites outside of Facebook. “Sharing” is tapping into the networking potential of Facebook; and with enough shares, it is very easy to see how quickly one story can go viral. This potential all starts with one person sharing.

We at the Meso Foundation still appreciate it when we get “Likes.” It is an informal way of knowing when a particular blog column or news item resonates with our community. “Sharing” our news and what we do at the Meso Foundation, however, is what we strive for as this is our most effective means on Facebook to spread our message of mesothelioma awareness and call for action. The more people share our status updates, our news postings, and our photos and videos, the more assurance we have that our message is extending beyond our circles and more into your own. So the next time you are visiting us on Facebook and giving us a “Like” go one step further and “Share” that item (or items) on our page that caught your eye. It may surprise you just how far-reaching that simple gesture of sharing will go.

Besides, it’s something we’re taught all through life — it’s good to share. Right?

That new arrival is me. Hi.

I’m Tee Morris and I have just joined the Meso Foundation in the new role of Web Content and Social Media Manager. My focus here with the Foundation is to provide up-to-date and informative mesothelioma-related content in the form of blogs, podcasts, and other content outlets such as Twitter, Facebook, and Tumblr. Some of these online resources you may be familiar with while some may be brand new to you.

A few years ago, mesothelioma patients and their families had a very difficult time finding others in their similar situation. Now through social networking, people can quickly connect with the Meso Foundation and others within this community. Through outlets like Twitter, Facebook, Tumblr, and many others, you can ask the Meso Foundation questions and receive nearly instant answers, and you can give and receive peer support any time of day (and often even night).

This is where I come in. I am here to help you access these new outlets as well as keep you up-to-speed on how comfortable environments like this blog and Facebook are working to inform you of the latest developments in our battle against mesothelioma. Think of me as the Swiss Army Knife of the Foundation.

As you begin to know me, you might have a few questions for me. Below are just a few I’m going to try and answer right now; but if there is anything else you’d like to know, you can find me (and connections to the Meso Foundation) online at:

• Twitter — @curemeso
• Facebook — Thomas Morris
• Facebook Fan Page — http://www.facebook.com/curemesothelioma
• Facebook Group Page — http://www.facebook.com/groups/18698628020/
• Tumblr — Believe in a Cure (http://team-curemeso.tumblr.com/)
• Google+ — Thomas E. Morris
• The Meso Foundation Blog — http://curemeso.wordpress.com

So why did the Meso Foundation bring you on board? That is probably the easiest question to answer. The Meso Foundation found their social media presence was growing and growing fast. They found a need for someone who not only understands the tools of social media but also has experience developing social media strategies and cultivating online communities. This is part of what I am bringing to the Meso Foundation.

Who are you? I mean, yeah, you’re Tee, but what exactly do you do? I am an accomplished writer, instructor, and public speaker on social media concepts.

You’re a writer? Have you written anything I’ve heard of? Maybe. Depends on what you like to read. My first book concerning social media, Podcasting for Dummies (co-written with Evo Terra), was ranked #1 by Nieslen BookScan on the subject of podcasting. It was so popular, I was invited to write a second edition (with podcaster Chuck Tomasi). I penned for Que Publishing the popular title, All a Twitter, and immediately followed that up with Pearson Publishing’s Sams Teach Yourself Twitter in Ten Minutes.

You also say you’re a public speaker. Where have you hosted seminars? I’ve been across the country and around the world with various social media topics, a few of the standout talks for me being:

• The Library of Congress (Featured Speaker)
• Te Papa Tongawera, Wellington, New Zealand (Featured Speaker)
• LIANZA of Wellington and Auckland, New Zealand (Featured Speaker)
• CREATE South (Keynote Speaker)
• Blogworld
• The Washington DC Tech Expo
• Book Expo America
• CADCA National and Regional Conferences
• The 2008 NOAA Regional Conference in Washington, D.C.

Wow, you’ve been to New Zealand? Is it really just like The Lord of the Rings? Yes, and it’s true — one simply does not walk into Mordor. You drive through it. Very fast.

So what else do you do? Part of how I stay in touch with trends and new outlets of social media is by blogging and podcasting science fiction. I’m also a husband, a dad, and a well-trained human to five extremely high maintenance cats.

So this is a little bit about the guy who will be working with you all to get you all the latest from the front lines of mesothelioma research. I look forward to connecting with you all here at the blog, on Facebook, on Twitter, and other social media networks, our outlets continuing the message of the Foundation to believe in a cure.

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 at a press conference for the MODDERN Cures Act. Bonnie is on the far right, her Congressman Leonard Lance is third from the right.

It was a really difficult decision for me to stop working due to mesothelioma.  I loved my job but I was so sick, I would sit around in pajamas most days feeling sorry for myself, having my own pity party.  I needed to work on something besides my own daily medical battle.  I couldn’t just sit around and do nothing anymore.  I decided I was going to try to get Meso  Awareness Day Sept 26 passed in NJ  I had no idea about politics or rules, or what legislative people to see or how to contact them.  My friend June told me to make an appointment and she would come with us (I got my husband involved too).  I realized I could do this on the days I felt good.  I consulted with June on how to get the attention of my politicians. I can hear her mantra, “call them, write letters, call them again, send them emails, make sure they know you. Go to the politician’s home offices when they are not in the capital on both state and federal level and tell them your story about dealing with mesothelioma, stand on their doorstep if you need to get their attention.”

Our first stop was a NJ state senator’s office. My husband, our daughter, June and myself met with his aides as constituents (his voters) and put our cards on the table and so did they.  We spoke on mesothelioma and asbestos and finally reached a deal to get the stalled bill out of the committee and onto a floor vote. (Note here that I didn’t know what a constituent was, a committee or a floor vote, I was totally politically ignorant).

I got my meso information and asbestos patter down to 15 minutes, and started contacting all the representatives I could, and visiting those from my district, and some out of my district.  I got to know their aides and their names, I called to update them or just to say “hi” so they would remember me. We would go to speak to any politician at any state, or town fair as they were shaking people’s hands.  I had decided we would be tenacious.  I found out about deadlines and the way to find out timeframes for a bill to be introduced and acted on.  If we didn’t find out on our own what those dates were, we lost the ability to get the bill introduced or voted on at each level and had to start all over again during the next election year, contacting the many layers of Democrats and Republican levels of aides to get a bill noticed and passed.

Maybe that’s why our government is failing, so many aides, so many levels, so many people to contact about a bill.

A girlfriend who was a Rotary member asked us to speak at a monthly meeting. We found other Rotary members we knew and asked if they were interested in having us speak to their group.  I met a Rotary member at our tiny town fair and told him about mesothelioma and on asbestos dangers and facts, and got another speaking engagement.  I was on a roll and started emailing those program chairs to speak.  I try to space them out for when I feel well in between multitudes of doctor appointments.  I start up conversations in the grocery store while in line, or any other place and find people are amazed, that mesothelioma is not just a word on the television and that asbestos is still imported into the USA.  During September I go to every business in town with posters for Mesothelioma Awareness Day (MAD) and speak to every store owner about it. We drop off MAD posters to all our district politicians. We set up a table at our little township’s Veteran’s Day parade. Thank goodness it was overcast, as I can’t take heat and sun. The weather is what stops me from setting up tables at every fair. My numerous illnesses prevent me from holding events.  But I can talk.

By meeting so many people we were able to work with our state Work Environment Council, a terrific nonprofit that has helped us spread the word.  Then this past December I was told I was being honored by this organization along with some pretty impressive people. After the awards speech, leaders of every major union in our state came up to me, everyone had tears in their eyes from what I had to say.  Not only did all these leaders learn about our dealings with mesothelioma to bring back to their groups, but our state teachers unions took notice and helped me tell every educator in NJ about mesothelioma.  I have come to realize we all have a part in teaching others about mesothelioma and asbestos.  The more people know the closer we get to people acting on these subjects, and hopefully enable more research.

One sentence leads to another, one meeting leads to another, one person leads to another, one story…your story told by you, your spouse, and your friend can make all the difference in educating others.  If you are home, all you have to do is pick up the phone and call to make that first appointment, send a group email to all your friends to make an appointment with their politicians.  After all, it’s about talking the talk that makes the difference to show everyone that we have walked that walk, and we don’t want others to have to do that.