Symposium Videos, Photos Now Available!

2014 Symposium Photos

In early March, the Meso Foundation held its 11th International Symposium on Malignant Mesothelioma in Alexandria, Virginia. We welcomed attendees from all over the world, including patients, caregivers, doctors, researchers, and so many others. The event was a huge success.

WEDNESDAY
Wednesday morning began as attendees gathered for breakfast before heading off to Capitol Hill for Advocacy Day. This is the time when the entire meso community welcomes the opportunity to educate our law-makers about mesothelioma and the need for mesothelioma research funding. This video gives a brief overview of the day.

Wednesday night concluded with a Welcome Reception for all attendees. The reception began with a keynote speech from Dr. Dean Fennel and then moved on to a night of passed hors d’oeurve, drinks, and socializing with the community. This was the first of many chances for attendees to mingle with old friends and make new ones. Take a look at some photos from the event!

THURSDAY
Thursday morning began with a Celebration of Life ceremony, which culminated in a release of doves over the pond outside the hotel. The theme of the ceremony was hope, compassion, and community.

Dove release

Doves were released during the Celebration of Life at the Symposium

The Foundation’s executive director, Mary Hesdorffer, NP, kicked off the day of sessions with a welcome speech in which she introduced the Meso Foundation’s staff, Board of Directors, and Science Advisory Board. We then heard from two keynote speakers: Dr. Ira Pastan, Head of the Molecular Biology Section of the National Cancer Institute, followed by Dr. Raffit Hassan.

Meso community

Every year, the community loves to get together at the Symposium. They find time to socialize even with a tight agenda!

Thursday continued with informative scientific and community sessions, started by Dr. Faris Farassati who discussed cancer stem cells. Mary was then joined by Dr. Marc DePerrot, Dr. Dan Miller, and Dr. James Pingpank to discuss post-surgical recovery. Dr. Tobias Peikert and Dr. Dan Sterman covered the topic of pulmonary health. In nonmedical sessions, Olga Pavlick led a newly bereaved discussion group, while Jessica Barker was joined by Rich Mosca and Hanne Mintz to discuss the importance of getting a proclamation in your area to officially declare September 26th as Mesothelioma Awareness Day. Miriam Ratner, Rev. Eric Linthicum, and Dana Purcell held a panel discussing the healing arts. Other topics of the day included exercise and nutrition, novel therapeutics, radiation oncology, chemotherapy, and early detection.

Thursday night concluded with an Awards Dinner. The dinner was MCed by Dr. Joseph Friedberg and Dr. Dan Sterman of the University of Pennsylvania, who did a great job keeping the atmosphere light-hearted and fun. We hope they never quit their day jobs, but surely they could also make a career in comedy!

Congresswoman Pingree

Congresswoman Pingree (center) with her constituent Lisa Gonneville (right) and Mary Hesdorffer, NP (left)

We were honored to have Congresswoman Chellie Pingree in attendance to accept the Bruce Vento Hope Builder Award, and she gave a powerful speech about her dedication to our cause and the need for mesothelioma research funding.

AWARDS
Rev. Eric Linthicum was presented the Compassion Award for his caring nature and dedication to the Foundation’s community. Dr. Michele Carbone received the Pioneer Award for his advancements in mesothelioma research. The Klaus Brauch Volunteer of the Year Award was presented to Olga Pavlick and Sarah Pavlick for their incredible efforts in organizing fundraising events and volunteering with the Meso Foundation. Anne Alessandrini received the June Breit and Jocelyn Farrar Outstanding Nurse Award for her passionate work in the Thoracic ICU at Brigham and Women’s Hospital. Jocelyn Farrar’s daughter presented the award to Anne. We also had a surprise award, the Philanthropy Award, which we presented to Don Bendix for his financial dedication to the Meso Foundation and mesothelioma research funding.

FRIDAY
Friday morning, the community was up bright and early for another day of sessions. The day began with a translation of the Scientific Seminar from Dr. H. Richard Alexander. He was then joined by Dr. Lee Krug to discuss the current state of mesothelioma research. Friday was not all about science, however, as we also held sessions such as yoga, walking for health, and art therapy. Following a brief update on the state of the Meso Foundation, Melinda Kotzian moderated a panel about getting involved and how you can help the Foundation. We heard from Maja Belamaric, Dana Purcell, Bonnie Anderson, Erica Ruble, Marina Mintz, and Rich Mosca on the many, many ways to get involved – from simply telling your story to events and advocacy. Other sessions of the day included a legislative update with Jessica Barker, a session with the American Legion, a talk on the empowered patient from Mary Hesdorffer, a session on chemo brain, a session on how to host a fundraising event as well as a fundraising panel, and more.

Meso Fighters Band

The Meso Fighters Band took the stage at the Community Dinner

Friday night served as a celebration wrapping up another successful Symposium. The Community Dinner was more like a community party than anything else. After an excellent buffet, attendees were surprised with a choreographed dance from Melinda Kotzian and Mary Hesdorffer (don’t worry – we have a video!). Following suit, much of the community took to the dance floor as the Meso Fighters Band took the stage. The Meso Fighters Band, which is made up of patients, doctors, and bereaved, played multiple sets featuring a playlist that mixed rock and pop. We heard everything from Janis Joplin to Katy Perry, and it was all fantastic. We ended the Meso Foundation’s 11th International Symposium on Malignant Mesothelioma with a celebration of our incredible community.

TAKE A LOOK
We have released videos of many sessions and speeches from the event. Watch the videos on our YouTube channel.

You can also check out some photos from the Symposium!

Have You Been Seeing Fewer Posts from the Meso Foundation in your Facebook Feed?

Meso Facebook LikeIn recent years, social media has become a valuable tool used to assist nonprofit organizations in raising awareness of their cause and programs. The Meso Foundation has been taking advantage of a number of platforms for this purpose, and is currently present on Facebook, Twitter, and YouTube. We use these social networks to connect with our community, provide news and information, promote upcoming events, fundraise, and simply to discuss mesothelioma and raise awareness of this cancer. We have found that Facebook, in particular, is an ideal social media tool for our purposes, and we have been using it extensively.

However, as a business, Facebook is focused on making money.  Recently, in an effort to do just that, Facebook engineers have made changes to the way posts are displayed on your news feed. Just a few months ago, those of you following our Facebook page would see our posts regularly. Now, however, Facebook shows our posts to only about 10% of you. The goal for Facebook is to increase the amount of money they make from organizations using paid advertisements. As a nonprofit organization, we don’t have the luxury of spending much money to promote information that should be accessible to you for free, and for this reason, we need your help!

In order to give our posts more visibility, Facebook wants to see first that our content is interesting. This is gauged by the number of likes, comments, and shares a post receives. So here’s how you can help out:

  • Interact with us! If you see a post that interests you, click “like” and leave us a comment.
  • If you think your own network of friends will like the post, share it.

Not only will this allow us to hear your thoughts and opinions, but it will give our content more play by telling Facebook that our posts should be released to more of our followers. The more you interact with our posts, the more people will see them.

To break it down, here’s an example: The Meso Foundation posts an article from our blog on Facebook, and it is seen by about 200 people. If each of those 200 people like, share, or comment on the post, it will be seen by the friends of each person! This gives our content a much larger reach, and in turn, gets the word out about mesothelioma.

Through social media, we are given the opportunity to directly connect with our community members. We want to hear your questions, comments, concerns, and thoughts on the content we post. Even if you have nothing to say, a simple like or share will go a long way in getting our content out there to more people. Through these efforts, we hope to raise mesothelioma awareness while building an online community dedicated to the mission of developing effective treatment and a cure for mesothelioma patients.

If you haven’t already, be sure to like the Meso Foundation on Facebook and follow us on Twitter.

To Live Until We Say Goodbye

One of the great things about this community is the unedited and unconditional sharing of every aspect of our journey. Some are navigating peaks, others valleys, but we call out to each other, regardless of our location, with descriptions of the terrain and what we can see from our vantage.

The past week has been a difficult one for our community. Journeys have ended, and voices that used to call out to us have been silenced. For me, the sorrow of those losses has been compounded by finding myself on a part of the meso continuum that I had hoped to avoid a bit longer.

I’ve been lucky to date in that every time my meso reared its ugly head again, there was something in the treatment arsenal that beat it back into remission. But this time is just one time too many – there is nothing left to employ against relentless meso that won’t stand a good chance of killing me in the bargain. Like so many warriors before me, I find myself faced with physicians who are honestly stating that they have nothing to offer that might help me fight back even one more time. It’s like being trapped in that archetypal action movie scene where the victim shoots and shoots but misses and the bad guy keeps coming. The victim runs out of bullets as the villain sneers at the sound of the empty chamber clicking, while in desperation, the victim flings the empty gun at the bad guy to no effect….

So OK – now I’m here with steadily progressing disease and not even an empty gun to throw….what do I do? It took a few days of self-pity and panic to realize the answer: I do as I’ve always done – I live.

Our journeys with meso are really no different from any journey in life, but the nature of what has brought us all here  – the disease that rides with us –  has the effect of concentrating our experiences and emotions, boiling our life journeys down to more of their essence, and clarifying our priorities. Everything seems more acute, everything seems to carry more impact.

What would I be doing if I didn’t have meso?  Aside from a few physical activities that demand stamina beyond my current capability, nothing really.  The laundry would still require washing and meals preparation. The cats would still purr on my lap and solicit petting. I would still visit my friends and talk on the phone, and I would still engage in activities relating to public health. I would still watch my favorite TV shows and videos, read books, work crossword puzzles. I would still love my husband and smile at him sitting across the room. Nothing the doctors have said prevents me from doing any of those things. And nothing they said lets me know truly how long I have in which to do them.

 

If I were to seriously consider what meso has stolen from me, one answer might be an assurance of a future. But if I stop and think logically about it, even without meso, such an assurance is non-existent. I might hope to live a certain number of years based on a statistical median, but there’s no guarantee of my doing so.

Perhaps the answer might be that it has robbed me of physical abilities. But again, life held no assurances that I would remain physically intact or healthy throughout my span of years.  In fact, I could consider myself lucky that I was born whole and capable, and remained that way for more than fifty years. I can point to people born into wheelchairs who would love to have even one day of such functionality.

Well then, surely meso has stolen the comfort I took in investing in my life, with a fear of encroaching mortality causing me to view joys as potential losses. Most people go through life without maintaining a conscience awareness of how ephemeral they actually are. I haven’t enjoyed that relative bliss since my diagnosis – meso has always been there, the scars and the pain and the pills, the constant scans and check-ups, all a constant reminder that life wasn’t really normal.

But there is no “normal” really. There is only the journey we are on, whatever it consists of – the unique road we travel that is ours and ours alone. There is no map or GPS or any way to view ahead. For each of us, life lasts up to the moment it stops. No one can tell with any certainty when that will be for me or anyone I know.

In the past few days, I’ve had some people tell me not to give up and others tell me not to be pessimistic. Yet I am neither. Is the progression of my disease to this point a cause for general gloom? Not at all. I truly do believe that science is moving forward regarding meso, and that the increase in treatment options and clinical trials that have arisen since my diagnosis in 2002 hold real hope for the future.  I meant what I said at the last Symposium:  the day when meso is no longer a life-ender is just over the horizon. It’s the desired destination that many of you out there will get to see, I promise. That I may not get there myself is just the way the cookie crumbles.

I’m not surrendering so much as preparing myself for all eventualities. I have not given up on wanting to stay alive – if there was a treatment out there that would provide me with a reasonable shot at more time I’d take it. And if something new comes along in the interim, watch out – I’ll be butting and pushing my way to be first in line! I’m no different than anyone – humans are genetically programmed to want to live. To prefer life over death is a fairly essential survival strategy that nature has built in to us. But ultimately no one lives forever. At some point, and for some cause, all our journeys end. That too, is life….

I didn’t spend seven-plus years fighting meso on the physical front  - enduring surgery, chemo and radiation – only to capitulate and surrender the emotional ground. I’ve given meso time and mental anguish and body parts (I joke that I’ve been sending myself to heaven one piece at a time) and I sure as hell don’t plan on giving it my life one second sooner than the moment I die. All of us here and everywhere – we each have our lives for a brief period and no control over how long that period is to be or what exactly will end us.

The only thing we can do – the thing we are created to do – is to live our lives while we have them, up to the very moment we say goodbye. That’s what I plan to do for however many days are left me. I have people I want to see, letters I want to write, cats who need petting, and flowers that need tending…..miles yet to go before I sleep.

~June Breit

The Power of Community

Reading the recent postings, I was struck anew by the sheer power of a force that has never stopped astonishing me since the day of my diagnosis, over 6 years ago. I’m referring to the power of community, and nowhere is everything that term implies more amply demonstrated than here.

I’ve frequently mentioned how, as a nurse, I’ve seen a lot of support groups and support systems, but nothing matches the mesothelioma community for determination, openness, and unconditional compassion.  We are a diverse group in terms of age, politics, background, and beliefs, and yet these differences are instantly swept aside in order to focus on our shared experience. We nimbly bridge any gaps for the purpose of communicating the essentials and bolstering our common humanity.  In this age of fragmented societies, the rest of the world would do well to model what we have put into practice so instinctively.

I’m not just singing the praises of this community for lack of anything better to do – I think it’s important to review this phenomenon on an ongoing basis to point out just how vital a role it plays in the lives of others. You have only to look at how the tone of what is written by a newcomer changes over the course of a few posts to see the impact clearly. What starts as tentative and fearful morphs into hope and relief, and even joy. Where else on earth would any of us find the opportunity – indeed, the privilege – to have such an effect on the lives of others?

This is the nature of awareness. We seek to spread awareness not only to call attention to our own plight, but to shine a light in the darkness so that others who are in need can find the same optimistic path. For every newcomer who finds their way to this resource and says “thank goodness I found this group”, there must be many others who for one reason or another, never realize we are here.  I for one cannot imagine dealing with a diagnosis of mesothelioma without the benefit of the “common unity” the Foundation provides. This is what makes awareness activities so critical.

We all need to invest in an effort to “spread the word”. Yes, we may make other people aware that meso exists and requires funding. But realistically, we all know how many causes there are out there clamoring for the attention of busy individuals who are leading ‘normal’ lives – if they are lucky, these people may never attach much importance to what we say about meso.   There will be, however, many people who are NOT so lucky, and who will hear (or have heard) the word “mesothelioma” from the lips of their doctor and not know what to do or where to turn next. They are our primary target audience.

Each of us can acknowledge what the support of the community has meant to us by ‘paying it forward’. We can reach out to others lost in the same dark despair that once colored our own lives, and do so with a minimum expense of time and energy on our parts. And there’s a plus: in doing so, we strengthen ourselves and our community in the process…

The Foundation has brochures for patients that can be left at physician offices, cancer clinics, etc.  Think about your area and where such materials might be most likely to reach their intended audience. In addition to the brochures,  the Breath of Hope newsletter (consider passing your copy on when you’re done reading it) can be left in waiting rooms, pharmacies, wellness centers where potential patients might see them, or in locations frequented by at-risk populations (like union halls or veterans’ centers).

If you’re able, add the personal touch to your outreach activities. Let the places you visit to leave materials know that you are available to speak to any patient who wants more information. Even if you can’t get out and visit places, you can call doctors’ offices, clinics, etc., and/or send them letters letting them know you are available to help any mesothelioma patient/family who asks for such assistance.

One caution – and I hate to bring it up in this heartfelt discussion about human contact, but we do live in thereal world after all….. Be prudent about passing out personal information. Consider setting up a separate email address that can be used solely for outreach efforts and responses, and don’t readily supply your address until you are certain about doing so.

Lately, I’m realizing that I really am NOT alone – there are a lot of us here in the Northeast, particularly in the PA, NJ and NY region! We’ve gotten together on an occasion in the past, but we’re currently contemplating taking it one step further and pooling our ideas, energies and resources to organize an annual September fund-raising and awareness activity. We’re already exchanging emails on the subject, and hope to all meet somewhere mutually accessible for lunch and brainstorming.

Perhaps, like me, you have other members of the meso community near where you live. Wouldn’t it be great to meet somewhere to talk face to face, and share resources and tips pertinent to your area? Even if there are just a few of you, think about meeting in a coffee house or library. Consider going together to local civic centers or groups to offer resources and information to other interested people, bringing with you brochures, newsletters, or even a laptop for referencing the Foundation website.

Community occurs on so many levels…. It happens every time you post in the online forums to share tips, consolation, or joy in a good diagnostic result. It happens every time you share your phone number or email to a ‘newbie’. It happens every time to talk to the other patients in the waiting room at your doctor’s office or chemo clinic.  It extends out from the web and the Foundation into the wider human community, into yourcommunity.  In the face of a powerful enemy – meso – it is an even more powerful medicine, and YOU are its distributor!

We live in a very, very big universe, relatively small beings on a relatively small planet, circling a relatively small sun. Compared to the timescale of worlds, our lives are brief, and they often seemed plagued by cruelly capricious fate. What gives those lives their dimension, depth, and meaning is ours to fashion out of whatever we have at hand. I’m going to paraphrase Bec again: true star children fashion light out of darkness, to both illuminate their own path and shine a light for others who follow. The coming months of approaching winter, with the short days and lengthening dark, seems like an especially good time to find ways to shine!

~June Breit