Mission Cure Meso: A Wrap-Up of April Fundraising Events

Cycling for Mesoby Dana Purcell, Development Coordinator, Mesothelioma Applied Research Foundation

Spring is here and fundraising events for the Mesothelioma Applied Research Foundation are in full swing! April was a busy month for community fundraisers. Each event had a special connection to mesothelioma and a creative way to bring in funding towards research, education, and advocacy. From California to New York, Meso Foundation staff members and board members were able to see the great efforts of the meso community.

The month started out with an event on April 6th in California, the Rock for Peace Benefit Concert. This event was organized by the Santa Margarita Catholic High School’s Breath of Hope Club and the Bendix family to contribute funds towards the Ken Bendix 2nd Memorial Grant. Over 200 people were in attendance and the concert featured two bands and three soloists, as well as a YouTube video played to raise mesothelioma awareness.

On Saturday morning, April 12th, the Get the Lead Out! 5k/10k and 1 mile walk took place on a perfect spring day. The event was hosted by The Norm Kulig 2Young2Go Foundation, which was formed by siblings who lost their brother, Norm, at the age of 42 to mesothelioma. A portion of the funds raised from this event is given to the Meso Foundation and has been a proven success for many years now. Bill Kasenchar did a fantastic job with the logistics of the event and making it a success yet again!

Get the Lead Out!The last weekend of April included three events for the Foundation, one being the 5k for Michael Bradley. This event was all about community and honoring Michael, who had passed just days before the event. There were family and friends that drove over 12 hours to participate in the 5K. Members of the Varnell, GA community gathered to lend a hand and offer support. Melinda Kotzian, CEO of the Meso Foundation, was there to thank all the attendees and give a special thank you to the Bradley and Neuenschwander family.

Cycling for Meso was the 1st annual event hosted by Gori Julian and Associates in Edwardsville, IL. Participants endured one of three trails that were 3, 10, or 26 miles, making it fun for all riders of different levels to enjoy. The event was able to bring a high amount through sponsorship and proved to be a real community event. Dawn Devine and Chrissy Howard worked so hard getting silent auction items, designing great t-shirts and making the event a true success.

On Sunday, April 27, the 9th Annual Walk for Hope took place in Eienshower, New York. The event is organized each yearby Janice Malkotsis and Meso Foundation board member Erica Iacono in memory of their fathers, Joseph Lombardo and Anthony Iacono. It was a gorgeous day for a long stroll in the park, and the walk was followed by a raffle that included prizes such as New York Met tickets!

The Meso Foundation wants to thank everyone for their incredible efforts and the hard work they put into these events. The hard work our fundraisers put in to these events helps the Foundation get another step closer to our goal!

Visit curemeso.org to see a list of upcoming community events.

Introducing Meso-Connect: A Peer-to-Peer Support System

Find mesothelioma support through the Meso Foundation’s new peer-to-peer support system Meso-Connect.This week, the Meso Foundation launched Meso-Connect, a peer-to-peer support system aimed at helping mesothelioma patients and their families to combat isolation by connecting them with peers who are going through, or have been through, a similar experience.

Due to the rarity of mesothelioma (3,500 patients diagnosed each year in the United States) and the aggressive nature of this cancer, most patients feel alone in their fight. For mesothelioma patients, even just obtaining a diagnosis can often be a long process. Finding a specialist and the prospect of drastic surgeries, chemotherapy, and radiation can be even more daunting. For this reason, we have developed Meso-Connect. Through Meso-Connect, the Foundation identifies and connects individual mesothelioma patients and/or their caregivers with members of the mesothelioma community who “have been there, and have done that.” All participants in the program are carefully screened to ensure a safe experience and fit.

This service is aimed at patients in all stages of a mesothelioma diagnosis. For a patient in the early stages of surgical recovery, for example, speaking with a peer who has successfully recovered may provide hope and inspiration. Additionally, the program is also available to caregivers, as well as those who have lost a loved one to meso.

Meso-Connect is also beneficial for those members of the mesothelioma community who choose to be on the helping side. Speaking with patients who need guidance can provide them with a sense of purpose and can serve as a reminder of their own progress.

To participate in Meso-Connect, either as someone receiving help or as someone providing help, patients and families must first register. Once signed up, each participant will be thoroughly screened. Those registrants who indicate they are willing to help others will receive training and guidance prior to their assignment. All participants are expected to comply with the terms, rules, and regulations of the program.

More information about Meso-Connect is available at curemeso.org/mesoconnect.

Symposium Videos, Photos Now Available!

Videos and photos from the 2014 International Symposium on Malignant Mesothelioma.”

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.

Celebration of Life ceremony at the mesothelioma symposium.

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.

The annual mesothelioma symposium brings together mesothelioma patients and caregivers.

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 with her constituent Lisa Gonneville and Mary Hesdorffer, NP  at the 2014 International Symposium on Malignant Mesothelioma.

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.

The 2014 mesothelioma symposium included a performance by the 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