Thank You from Mary Hesdorffer

Mary Hesdorfferby Mary Hesdorffer, NP, Executive Director of the Meso Foundation

It feels like a time warp as we move from project to project, one day blending into the next. We are deeply immersed in planning three regional conferences before this year ends, and projecting what is in store for us in 2015.

I would like to take this opportunity to personally thank all of those who participated in our 2014 Symposium, which took place in early March. It is so important that we gather together to address the individual and global needs of the mesothelioma community. Weren’t our doctors amazing? I was so grateful that they came out in large numbers to support us and to impart valuable knowledge and support to those in need.

I would also like to thank the individual members of the staff who made the conference appear so effortless.

Erin Maas was responsible for the site location and all of the logistics that go along with running a conference. Thank you, Erin, for a job well done.

Maja Belamaric and Beth Posocco were in charge of communications and marketing the conference, work that is not always visible to the public. The live stream attracted nearly 600 viewers thanks to their tireless efforts to ensure that it was properly managed and advertised.

Erica Ruble was the unofficial hostess of the event making sure that everyone was welcomed and warmly introduced to others. Her fundraising knowledge and encouragement to others has helped us to grow exponentially.

Dana Purcell was responsible for planning many of the supportive care and fundraising sessions. I think we can all testify to a job well done and we look forward to her continued work on community events and individual fundraisers over the upcoming year.

Last but not least is our government affairs director, Jessica Barker. Jessica is well-known on the hill championing our causes and making valuable connections with politicians and government entities to provide our community with a strong voice in Washington. You will see Jessica making her rounds to many political events and she is a sage advisor to both Melinda and me. If you are planning to attend the ADAO conference taking place in Washington, DC in April, please introduce yourself to Jessica as she will be representing the Foundation at this asbestos-focused event. Unfortunately, I will be unable to attend, but I wish Linda Reinstein a successful conference.

Finally, our CEO Melinda is really owed a debt of gratitude for managing the business side of the Foundation and ensuring our financial health so we can remain strong in achieving the goals of our mission. It is a pleasure to work closely with Melinda as she brings her impressive non-profit background into the discussion and helps me to advance the scientific agenda of the Foundation, proving continuously that two heads are better than one!

Keep in close touch with me and let me know your thoughts on how we are doing. Also, we will soon be announcing the date and time for another telephonic town-hall meeting to discuss the future and current state of the Foundation.

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.

GUEST BLOG: Krisha Deaver and Why She Needs the Symposium

Krisha and Cam Deaverby Krisha Deaver

I’ll be honest: I wasn’t sure I wanted to go to the Symposium last year. I knew I needed to go, but that’s not the same thing.

I needed to go because information is power when fighting an elusive enemy like mesothelioma.

I needed to go because fighting cancer is lonely, and I wanted to meet people who understood.

I needed to go because my husband, Cam, is everything to me—and I’ll do whatever it takes to help him beat this disease.

But all the same, I wasn’t exactly looking forward to it. In hindsight, I can recognize my hesitation for what it was: fear.

I was afraid it would be sad. I was particularly worried about a session that recognized those who had passed away during the year. I couldn’t face that — I was terrified of losing Cam. So guess what I did? I gave myself permission not to attend that session. And that was a fine approach because it was what I needed to do at the time.

I was afraid that the Symposium would be too much for me emotionally — three full days of staring into the face of meso. That fear seems laughable now. After all, hadn’t I been consumed for months doing exactly that? Through research, doctor visits, tests, and surgery, I’d been relentlessly staring down the beast.

Rather than being overwhelming, the Symposium was a tremendous relief. Admittedly, there was a lot of information and new faces and ideas to take in, but I ultimately found myself surrounded by people equally passionate about finding answers to this disease.

It was a relief to hear researchers present their findings. Even if I didn’t follow all the science, I understood enough, and I was grateful that the researchers could see my pleading eyes in the audience. I’m glad that I sat next to my husband, squeezing his hand, and helped to put a face to the need for more research.

It was a relief to attend the session for caregivers and hear from a panel that helped me feel connected. It was a relief to ask my toughest questions to that group and gain their wisdom and support.

It was a relief to approach a brilliant researcher after her presentation and ask a follow-up question specific to Cam’s recovery. I was able to pick the brains of every other doctor I could catch.

It was a relief to hear from dedicated and passionate fundraisers and learn how I can help contribute to the effort to find a cure.

As the Symposium was winding down, it was a wonderful relief to attend the closing celebration. At this annual dinner, I listened to Cam optimistically talk about his journey and perspective, and it was one of the proudest moments of my life.

In the year since the Symposium, when I feel fear creeping in, one of the things that keeps me grounded is remembering the network of support I built by attending. Even though Cam and I were part of the Meso Foundation’s online community prior to the Symposium, nothing can compare to actually meeting others who “get it.”

At this year’s Symposium, I can’t wait for a fresh infusion of information, friends, and hope. Fear doesn’t stand a chance.

Dr. Ira Pastan of National Cancer Institute to Speak at Mesothelioma Symposium

Dr. Ira PastanThe Mesothelioma Applied Research Foundation announced that Dr. Ira Pastan, the Head of the National Cancer Institute’s Molecular Biology Section, will be the keynote speaker during its 11th annual International Symposium on Malignant Mesothelioma, taking place on March 5-7 in the Washington, DC metro area.

Alexandria, VA (PRWEB) February 28, 2014

The Mesothelioma Applied Research Foundation announced that Dr. Ira Pastan, the Head of the National Cancer Institute’s Molecular Biology Section, will be the keynote speaker during its 11th annual International Symposium on Malignant Mesothelioma, taking place on March 5-7 in the Washington, DC metro area.

Dr. Pastan is a world-renowned scientist known for his work in cancer research. Along with colleague Mark Willingham, he discovered mesothelin, a protein that is over-expressed in mesothelioma, as well as certain other cancers. This discovery has made it possible to develop an immunotoxin, SS1P, which targets the mesothelin antigen. SS1P has shown much promise in clinical trials by producing major tumor regressions lasting up to two years.

“It is an honor to have Dr. Pastan, one of those most imminent cancer researchers in this nation, joining us at our International Symposium on Malignant Mesothelioma,” said Mary Hesdorffer, NP, the executive director of the Mesothelioma Applied Research Foundation.

“Hearing about his promising work directly from Dr. Pastan will be a very inspiring experience for the mesothelioma patients in attendance, as well as others interested in curing mesothelioma,” she added.

Dr. Pastan will speak to the Symposium audience on Thursday, March 6 at 9:15 AM. The program will also be broadcast live on the web at http://www.curemeso.org/symposium.

Mesothelioma is a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos. Medical experts consider it one of the most aggressive and deadly of all cancers. Approximately 3,500 Americans are diagnosed with mesothelioma every year and an estimated one-third were exposed while serving in the Navy or working in shipyards.

ABOUT THE MESOTHELIOMA APPLIED RESEARCH FOUNDATION
The Meso Foundation is the only 501(c)3 non-profit organization dedicated to eradicating mesothelioma and easing the suffering caused by this cancer. The Meso Foundation actively seeks philanthropic support to fund peer-reviewed mesothelioma research; provide patient support services and education; and advocate Congress for increased federal funding for mesothelioma research. The Meso Foundation is the only non-government funder of peer reviewed scientific research to establish effective treatments for mesothelioma and, ultimately, a cure for this extremely aggressive cancer. To date, the Foundation has awarded over $8.7 million to research. More information is available at http://www.curemeso.org.